FAQs

Got questions about the study? Check out the FAQs below. If you can’t find what you are looking for, contact us. We’re happy to answer any questions you may have.

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About the Life in Your Early 60s survey

  • Why my early 60s?
    • We are keen to hear from you every few years to keep up-to-date with how your lives are changing. Now you are entering your sixties; many of you are planning for retirement, having grandchildren and experiencing new things. We’d love to hear about your lives right now.

  • Why take part?
    • Taking part in the study is a chance to represent your generation, and to inform the support and services available in the future. The study will inform and improve policy in areas such as health, work and pensions. Most people usually enjoy taking part and find it’s a useful opportunity to reflect on life.

  • Who is running the study?
    • The study is managed by the Centre for Longitudinal Studies at the UCL Social Research Institute, a department of University College London (UCL). The visits are being conducted by two experienced independent social research organisations, NatCen Social Research, and Kantar Public, who have both conducted previous NCDS surveys.

      You can find out more on the ‘Management and funding’ and ‘Meet the team’ pages.

  • Who is paying for the survey?
    • The Life in Your Early 60s Survey is funded by:

      – the Economic and Social Research Council (ESRC)

      – the Medical Research Council (MRC)

      – the Department for Work and Pensions (DWP)

      – the United States National Institutes of Health (NIH)

  • Will the funders see my replies?
    • No, they will not know who said what. The names and address of respondents interviewed in this survey are only seen by a small number of researchers at the Centre of Longitudinal Studies, NatCen Social Research and Kantar Public who are involved in this study. Names and addresses will be kept separate from the questionnaire answers, health measures and blood samples, and never revealed without your permission. This means that responses can never be identified.

  • What does the survey involve?
    • We would like you to take part in the following:

      – an interview about your home life, relationships, housing, economic circumstances, and health

      – a paper questionnaire covering wellbeing, values, physical activity and leisure activities

      – a paper questionnaire about how well you remember your childhood

      – a visit from a nurse who will conduct a number of physical measures and take a blood sample

      – an online dietary questionnaire.

      For more information, please take a look at the survey guide.

  • How long will it take?
    • The interview will take around 90 minutes, and the nurse visit will take about an hour.

  • Is it compulsory to take part?
    • Taking part is completely voluntary, but most members of the study find it an enjoyable and interesting experience to reflect on life. You can skip any questions that you would rather not answer. Likewise, in the nurse visit you can agree to the health measurements that you want to take part in, and decide not to do others.

  • Can I take part in just the interview part?
    • Yes. Agreeing to the nurse visit is your choice. During the nurse visit you can decide to consent to some, all, or none of the measurements- this will not affect your participation in the study as a whole.  We really hope you do agree to a nurse visit as this will make the information we collect even more useful.

  • How can I be sure that the interviewer or nurse who has contacted me is genuine?
    • All interviewers and nurses who work for NatCen Social Research or Kantar Public carry an identity card. Interviewers will have a copy of the letter that was sent to you in advance. Nurses will have a copy of the booklet left with you are the end of your interview. You can verify the identity of your interviewer or nurse by calling NatCen Social Research, on Freephone 0800 652 4574.

  • I need to rearrange my appointment with the interviewer/nurse – what should I do?
    • If you need to rearrange your appointment, please call the interviewer or nurse directly if you have their telephone number. If you don’t, you can call or email NatCen Social Research on Freephone 0800 652 4574 or ncds@natcen.ac.uk.

       

  • On which days should I complete the online dietary questionnaire?
    • We would like you to complete the questionnaire on two separate days, which your nurse would have written on the front of the online dietary questionnaire leaflet.  If you provide us with a mobile number or email address we will send you reminders on the day the questionnaire should be completed.  If you are not sure, please contact us on Freephone 0800 652 4574 or ncds@natcen.ac.uk and we can tell you which days.

  • Why are we doing some interviews by video call?
    • Some of you may be asked to take part in your interview by video call, using Microsoft Teams. Due to COVID-19, we are following government guidelines and only conducting interviews in person when permitted to do so. Conducting the interview by video call allows us to continue with this important study at this crucial time. If we are permitted to contact you in person but you would prefer to take part by video call, please let the interviewer know this preference when they contact you.

  • Do I have to take part via video call?
    • No. If you prefer, you can wait until we are able to visit you at home to conduct your interview in person. Please just let the interviewer know this preference when they contact you.

  • Will taking part by video call be complicated?
    • No, taking part in a video call interview should be very straightforward for most people. The interviewer will telephone you and talk you through the process and will be able to help with any problems. If there are technical difficulties which stop you taking part via video call, we can arrange to visit you at home to conduct your interview in person once government guidelines allow us to do this. If you do find anything difficult or confusing, please tell us. Your feedback is very important.

  • Is video interviewing secure?
    • Yes. Your video interview will take place using Microsoft Teams. This software has been approved by the UCL Information Security Team. The software uses end-to-end encryption and authentication process which provides the highest level of security. Interviewers will make sure that they conduct the interview in a place where nobody else will be able to see or hear the interview taking place. The interviewer will record your answers on their laptop and the information collected will then be processed securely, in exactly the same way as the information we collect in face-to-face interviews.

  • Will the video interview be recorded?
    • No, we will not be recording the video call interviews.

Life in Your Early 60s Survey - Adding other information

  • What is “adding other information”?
    • Government departments and agencies hold information about people which they use for routine administrative purposes. From time to time we add information from these routine administrative records to the information you have given us as part of the study.

      In the age 50 Survey in 2008 we asked you for your permission to add information from health records held by the NHS and economic records held by the Department for Work and Pensions (DWP) and Her Majesty’s Revenue and Customs (HMRC) to the information you have given us in our surveys over the years. If you lived with a partner at the time we also asked them for permission to add information from their records.

      As part of the Life in Your Early 60s Survey, if you had not previously given your permission, we will ask your permission again. If you live with a partner who has not previously given permission, we will also ask their permission to add information from their records.

      The ‘Adding Other Information About You’ leaflet explains more about this. You would be given this leaflet by the interviewer towards the end of your interview, but can also find it here. Please take the time to read it and make your decision.

      You can also find out more by watching our video:

  • What information about me do you want to add?
    • The information we would like to add is kept in your health and economic records.

      National Health Service (NHS) records

      The NHS maintains information on all patients accessing health services through routine medical and other health-related records. These records are held within statistical health databases which record information about:

      – admissions or attendances at hospital (including dates of admission, discharge or attendance, diagnoses received, treatments given, surgical procedures)

      – visits to your family doctor or other health professional, e.g. midwife

      – records of specific conditions such as cancer or diabetes

      – prescriptions given.

      Department for Work and Pensions (DWP) records

      The DWP keeps records of everybody’s benefit claims and any periods people spend on employment programmes.

      Her Majesty’s Revenue and Customs (HMRC) records

      HMRC keeps record of everybody’s employment, earnings, tax credits and occupational pensions (since 1998) and National Insurance Contributions since the early 1970s.

      We will only obtain information from these records if we have permission from you.

  • Why is adding this information important?
    • Health records

      We collect information about your health in the interview, but this information is fairly limited in scope. The information recorded in your medical records is objective and based on confirmed diagnoses by medical professionals. However, medical records may not be entirely complete as they will not include details about problems, which have not been reported to a doctor.

      Combining information from the interview with information from your health records would give us a more complete picture of your health.

      This information will allow researchers to answer questions such as:

      – What are the lifestyle factors associated with the onset of particular illnesses?

      – What are the impacts of particular illnesses on other aspects of people’s lives such as employment, income and family life?

      Economic records

      For many years we have been collecting information on your economic circumstances. The information you have provided has allowed researchers to examine a whole range of issues like the financial benefits of education and training, the importance of early childhood circumstances on adult income and social mobility, which is the extent to which people’s social class or economic status changes between childhood and adulthood.

      Over the years, collecting information about sources of income has become increasingly complex, particularly since the widespread introduction of in work benefits and tax credits and changes in eligibility to different benefits and welfare to work programs.

      It is very difficult to collect sufficiently detailed information about tax credits and benefits, but these are increasingly a very important source of income for a lot of families – particularly since the economic downturn.

      Adding this information would allow researchers to look at important questions that have previously not been tackled in these troubled economic times including:

      – How has the introduction of in-work tax credits impacted on adult work decisions and child poverty?

      – What are the lifetime returns to education and training for people from different family backgrounds? How variable are these estimated returns?

      – How well prepared are baby-boomers for retirement and how does this vary by socio-economic background? How has this changed over time?

      – Have government welfare to work programs over the last 15 years worked and if so for whom?

      The information collected by the National Child Development Study, including information from administrative records, is collected and used for research purposes only.

  • Why are you asking for my partner’s consent?
    • The circumstances of the people you live with have a big effect on you. If, for example, your partner were to become seriously ill, or were to experience a prolonged period of unemployment, this could clearly have a significant impact on your life. We are only able to collect a very limited amount of information about your partner when we interview you, so adding information from their records will give us a much better understanding of your family circumstances.

  • Can you give me some assurances?
    • – The information cannot and will not be used to identify the health / financial circumstances of any named individual.

      – The information collected from your records will be held securely with no direct personal identifiers (e.g. name, address) – like all other data collected by NCDS.

      – No directly identifiable personal information (e.g. names and addresses) is provided to researchers.

      – This information cannot and will not be used to identify individuals claiming benefits fraudulently.

      – Giving permission will have no impact on any current or future benefit claims.

      – The information from your records will only be used by academic and social policy researchers for non-commercial research.

      – Your decision whether or not to allow us to add information from your records will not affect your participation in the study.

  • How do you add this information?
    • We provide your personal details (name, address, sex, date of birth, NHS or National Insurance Number (NI) – if held) to the NHS or NHS agencies, DWP and HMRC (or to a trusted third party employed by the government department or agency). No other information collected in the survey or held by CLS is passed to these departments, agencies, or to any trusted third party.

      These departments and agencies are trusted to keep your personal details secure (and are likely to already have your personal details) and have robust systems to manage this.

      The NHS, DWP and HMRC will use your personal details to identify the correct records.

      The NHS, DWP and HMRC will de-identify your records and send them to CLS or to the data store where your survey responses are held. CLS will be the data controller of this information.

      The NHS, DWP and HMRC will not use your personal details for any other purpose.

      CLS or the data store will link your records to your de-identified study responses using an anonymous ID. No information that identifies you will be provided to the data store.

      The linked survey and administrative information will be made available to researchers under restricted access conditions. The data store staff and research users cannot identify you from the data.

  • Will the government departments and agencies who hold my information see my survey answers?
    • Government departments and agencies will only receive the personal details they need to establish an accurate match to your records – such as name, address, date of birth, NI or NHS number – if available – nothing more. After your records have been identified, these details will be deleted. No information that you have given us during the study will be added to your administrative records.

  • How do you keep my information safe?
    • To keep your information safe, it is encrypted and sent via secure transfer systems. All information collected by the National Child Development Study, including information from administrative records, is treated in the strictest confidence in accordance with the Data Protection Act and the General Data Protection Regulation (GDPR).

  • Who will use the information?
    • The information will be made available to researchers under restricted access arrangements via the UK Data Service (UKDS) or similar organisation. Researchers based within the Centre for Longitudinal Studies may be given access to the linked data via the highly secure UCL Data Safe Haven (DSH). Access to the data via the UKDS or the DSH will only be granted in these secure research environments and after a successful application procedure, assessed and approved by the CLS Data Access Committee team and the relevant government department or agency (if required). This is to make sure this information is used responsibly and safely.

      Information provided to researchers will never contain your name, address, date of birth, NHS or NI number.

  • Can I be identified?
    • No. At no point will your name or address be connected to your linked information. We have strict controls about the way that information is added together to ensure that no one can work out who you are. Information from different administrative records will not be included in the same data file if it is possible to identify you.

  • How do the permissions that I (or my partner) give now relate to the permissions I have given in the past?
    • As part of the Life in Your Early 60s Survey, we will only ask about permission(s), which you have not previously given.

      The permissions you (or your partner – if you have one) give now will supplement the permissions you gave at the Age 50 Survey. Any permissions will remain valid unless they are withdrawn.

  • Can I decide on my partner’s behalf?
    • The information from your partner’s records is very important for us as this will give us a much better understanding of your family and household circumstances. This is, however, your partner’s personal decision.

      If they are not available, when you take part in your interview , we will send you an email (or letter if requested) to pass onto them. This will include an information booklet which explains the ‘adding other information’ request and what happens if your partner decides to give their permission. The email/letter will have a login code and web address for your partner to complete an online consent form.

  • Do I have to give permission to all records you ask about?
    • No. You can agree for us to add information from all of the records we ask about, from just some of the records or to add nothing at all – it’s your choice.

  • Can I check what I agreed to add?
    • We will send you an email (or letter if requested) after your interview which will outline the permissions you have given. You can also call the NCDS study team to confirm this.

  • How long will the permission last?
    • The information we would like to add relates to your past, present and future circumstances. We have not put an end date on the permissions that you give as we do not know exactly when we will add this information. Any permission you give for adding administrative information to the information we collect as part of the study will remain valid and we will collect these records on an ongoing basis – unless you tell us to stop. As our aim is to follow your whole life’s journey, we have not set a time limit for how long we will keep your records.

  • Can I change my permissions?
    • You can withdraw permission at any time for your NHS, DWP, or HMRC records to be added to your study answers without giving us a reason. This applies for any permissions that you (or you partner) may have given in the past. If we have already added some of your information, we will continue to use it for research purposes only, but we will not add any further information from your records.

      To change your permissions, please email the NCDS team at ncds@ucl.ac.uk or write to: National Child Development Study, Centre for Longitudinal Studies, UCL Social Research Institute, 20 Bedford Way, London, WC1H 0AL.

  • Can I see information from my records?
    • If you want to see the information held about you by any of the data holding government departments or agencies, you need to enquire directly with the individual organisations. We would be happy to provide you contact details for doing so.

Health Measures in the Life in Your Early 60s survey

  • What health measurements would you like to take?
    • We would like to carry out the following health measurements:

      – weight, body fat, waist and hip measurements

      – blood pressure and heart rate

      – grip strength

      – balance

      – walking speed

      – blood sample collection for analysis, storage and DNA extraction

      – online dietary questionnaire

      For more information, please take a look at our nurse visit guide.

  • Do I get anything extra for agreeing to the health measurements?
    • Unfortunately, we are unable to offer any financial payment for your health measurements. As always, everyone on the study team, and those who use the data, are extremely grateful for the time you have given to the study over the years. Without you we just couldn’t do it.

      If you agree to a nurse visit, the nurse will be able to provide you with measurements of your weight, blood pressure, grip strength, and body fat percentage. These are all indicators of present and future quality of health.  If you consent to providing a blood sample we can also provide you with your glycated haemoglobin and cholesterol levels. We can also send these results to your GP, if you give us permission.

  • Why are the health measurements useful?
    • Adding health measurements to the information we already have in NCDS gives us a unique opportunity to really understand your life in depth. They will allow us to answer many questions about the health of people in your age group, including questions about some of the most significant health issues affecting society today. For example, by asking you about your working hours and testing your blood pressure, we can see if the two are related. Many people find taking part in studies with health measurements a useful moment to reflect on their health and lifestyles.

  • Will I see the results of my health measurements?
    • Your nurse can give you a record of waist and hip circumference, blood pressure, grip strength, weight, and body fat percentage at the end of your nurse visit, if you would like them to. We can also send you the results of your blood tests.

  • What can my weight tell me about my health?
    • In the nurse visit we will ask to weigh you. We can record this on a card you can keep. If you know your height, you can calculate Body Mass Index (BMI). BMI is a frequently used measure of health. When reading your BMI score your age, sex, and ethnic group should also be taken into account.

      Further information on this calculation and guidance on your BMI can be found on the NHS website: https://www.nhs.uk/live-well/healthy-weight/bmi-calculator/

  • My nurse provided me with information about my body fat percentage, what can this tell me about my health?
    • Body fat percentage can be used to provide context to your weight measurement. Body fat percent has a strong link to chronic disease and health outcomes. Your body fat percentage should be interpreted in the context of your sex and age.

      Further guidance on interpreting your body fat percentage can be found on this website.

       

Blood sample in the Life in your Early 60s Survey

  • Why do you take a blood sample?
    • Collecting blood samples will help us to carry out important medical research. For example, we are interested in understanding things like how diet may influence cholesterol, and how different lifestyles can affect the chance of heart disease.

  • Why do you want to take my DNA?
    • With your permission we would like to extract and store DNA from your blood to use in future research. Current research suggests that an increasing number of illnesses have a genetic element, such as cancer, diabetes, asthma and certain heart conditions.

      Research using DNA from the blood samples previously given by you and other study members has led to important breakthroughs in our understanding of type 1 diabetes and Crohn’s disease. Looking at the genes from a large number of people combined with all the other information we collected about you, will help researchers to identify which genes are linked to certain conditions. This will help with understanding who is most at risk, which may in turn lead to improved diagnosis, treatment and disease prevention.

      You may remember giving permission for us to extract DNA from the blood sample you provided in 2002-4. A second DNA sample will provide a unique opportunity for research within the new field of ‘epigenetics’ which investigates how and why genes are expressed (switched on and off) and the effect this may have on health and other aspects of life.

  • Will I see the results of my blood test?
    • With your permission, we can send you the results from your blood tests. These results will be: total and HDL cholesterol and glycated haemoglobin tests. If you wish, we can also send these results to your GP along with your blood pressure results. We will need your consent to do this.

      If you consent to us extracting DNA from your blood sample, we will not be able to provide routine feedback of the results of genetic testing. Tests done on your DNA are not the same as clinical genetic tests and cannot be used for diagnosis. If, however, through the course of the research we find something that we think could indicate a preventable medical issue, we would attempt to contact you and advise you to consult with a medical professional.

  • Can my sample be used by lawyers in insurance companies?
    • If you agree to your blood pressure or blood sample results being sent to your GP, then she/he may use them in medical reports about you. For example, if you apply for a new life assurance policy, or for a new job. When people apply for new policies, insurance companies may ask if they can obtain a medical report from the GP. An insurance company cannot ask your GP for a medical report about you without your permission. Having given your permission, you then have the right to see the report before your GP sends it to the insurance company, and you can ask for the report to be amended if you consider it to be incorrect or misleading.

      Your DNA samples cannot be used by lawyers or insurance companies, and will be used for research purposes only.

  • Can you share my DNA with my doctor?
    • No, unfortunately this is not possible. We use a research laboratory to process the samples, not a medical laboratory. Your DNA will only be used for research purposes.

  • Could my DNA be used for cloning humans?
    • NCDS will not use your DNA for cloning humans. The use of human tissue and DNA is strictly controlled. The organisation that funds this research, the UCL Social Research Institute, and the committee which oversees access to the DNA for research, do not allow human cloning.

  • What if I change my mind?
    • You can withdraw your consent for the use of your samples at any time, without giving any reasons, by writing to us at:

      National Child Development Study
      Centre for Longitudinal Studies
      UCL Social Research Institute
      20 Bedford Way
      London WC1H 0AL

      We will then inform the laboratory and the stocks of your samples will be destroyed.

COVID-19 antibody testing

  • What is a COVID-19 antibody test and why did you ask me to take one?
    • Antibodies are made by the immune system to fight infection. A COVID-19 antibody blood test will identify whether you may have had COVID-19. We will use the result of the test to help us better understand how many National Child Development Study participants may have been infected with the virus which causes COVID-19, whether they realised it at the time or not.

      We don’t know yet if having antibodies gives someone long-lasting protection from the virus. The results of this study may be able to help guide public health policy and the government’s plan for its antibody testing strategy.

      Other research studies in the UK also asked their participants to complete the same antibody test. Analysing the information from the National Child Development Study, alongside these other studies, will give us a better understanding of how many people may have been infected with COVID-19 and why some people develop severe disease.

  • Can I still take part?
    • The deadline for signing up to take part in our COVID-19 antibody testing project has now passed. Thank you to everyone who agreed to take part.

  • Who was invited to take the antibody test?
    • We invited those who took part in at least one of our three recent COVID-19 surveys to take an antibody test.

      Other research studies in the UK also asked their participants to complete the same antibody test. Analysing the information from the National Child Development Study, alongside these other studies, will give us a better understanding of how many people may have been infected with COVID-19 and why some people develop severe disease.

  • How accurate is the test?
    • The antibody test will be conducted in a research lab, and not an NHS clinical-grade lab and is not 100% accurate or reliable at an individual level. The results show whether or not you have COVID-19 antibodies but cannot give a completely reliable individual diagnosis of whether you have had the virus. It is not known whether having COVID-19 antibodies will prevent re-infection, so regardless of your test result you should continue to follow government guidelines on self-isolation and social distancing. In addition, we encourage all study members to have the COVID-19 vaccine when offered, regardless of your antibody test result.

  • Can I reuse the test kit?
    • No, do not attempt to reuse the test. It is a single-use disposable device which is not intended for multiple uses.

  • When will I get my antibody test results?
    • You should have received your results by now. If you can’t see anything in your spam folder, please email ncds@ucl.ac.uk.

  • My result came back as ‘not clearly detectable’. What does this mean?
    • This means your blood test did not show a clearly detectable level of certain antibodies against COVID-19 infection. This could be because:

      – You have not been exposed to COVID-19.

      – Antibody status (both the level of the antibodies and the type of antibodies) changes over time from the point of infection, and so antibody levels may have declined.

      – You have been exposed to COVID-19 or had a COVID-19 vaccine but have different antibodies that this research test is not designed to pick up.

      Please be aware this antibody test is being carried out for research purposes only and only picks up certain antibodies against COVID-19. You should continue to follow government guidance on social distancing and self-isolation as appropriate. In addition, we encourage all study members to have the COVID-19 vaccine when offered, regardless of your antibody test result.

  • I’ve had the COVID-19 vaccine, but by test has come back as ‘not clearly detectable’, does this mean the vaccine hasn’t worked and I could still get COVID-19?
    • This antibody test is not a measure of vaccine effectiveness. After vaccination it can take some time for antibodies to appear in the blood which can vary from individual to individual, so depending on when you had your vaccination it may be that they have not yet appeared. It is also important to remember that these tests aren’t 100% accurate. At the moment, we do not know if the vaccine will protect everyone from getting or transmitting COVID-19. By taking part in research and telling us about your vaccination, you are helping us to understand more. Whatever your test result, you should continue to follow government guidance on social distancing and self-isolation as appropriate.

  • My result came back as ‘clearly detectable’. What does this mean?
    • Your blood test showed a clearly detectable level of antibodies against the virus responsible for COVID-19. This means that you may have had or been exposed to COVID-19 in the past and your body has created antibodies. Please be aware this antibody test is being carried out for research purposes only and cannot be used to confirm a current or previous case of a COVID-19 infection.

      You may also have clearly detectable antibodies after receiving a COVID-19 vaccine. This antibody test is not a measure of vaccine effectiveness. You should continue to follow government guidance on social distancing and self-isolation as appropriate.

      In addition, we encourage all study members to have the COVID-19 vaccine when offered, regardless of your antibody test result.

  • My result came back as ‘clearly detectable’ after having a COVID-19 vaccine, does this mean it’s worked and I’m protected from the virus?
    • A positive test result could indicate that you may have had an immune response to the vaccine and have developed antibodies. However, this antibody test is not a measure of vaccine effectiveness and it’s also important to remember that these tests aren’t 100% accurate. It is also possible that the antibodies detected may be present because your body has mounted an antibody response after previous exposure to COVID-19.  At the moment, we do not know if antibodies present in your blood will protect you from getting or transmitting COVID-19. Therefore, whatever your test result, you should continue to follow current government advice.

  • My antibody test result came back as invalid. What does this mean?
    • This means we do not know whether you have antibodies or not because the test did not work.  This may have been because there was not enough blood in the tube you returned or because of a technical problem at the laboratory. Unfortunately, we are unable to send out additional blood collection kits for further testing. You should continue to follow government guidance on social distancing and self-isolation as appropriate. In addition, we encourage all study members to have the COVID-19 vaccine when offered, regardless of your antibody test result.

  • I previously tested positive for COVID-19 antibodies but this study’s result came back as ‘not clearly detectable’. What does this mean?
    • This difference in results may be because:

      – Different antibody tests can measure different antibody types, which can lead to differing results.

      – This antibody test was performed using finger-prick blood sent via post. This means the quality of the blood sample will be lower than that produced with some of the other antibody test conditions, which may affect the antibody research test result.

      – Antibody status (both the level of the antibodies and the type of antibodies) changes over time from the point of infection, and so antibody levels may have increased or declined compared with other tests done at different times.

      Please be aware that all participants should continue to follow guidelines on self-isolation and social distancing as appropriate, regardless of your antibody test result. In addition, we encourage all study members to have the COVID-19 vaccine when offered, regardless of antibody results.

  • My antibody test results say I do not have clearly detectable antibody levels, but I previously I know that I have had COVID-19. What does this mean?
    • This could be because:

      – Antibody status (both the level of the antibodies and the type of antibodies) changes over time from the point of infection, and so antibody levels may have declined over time.

      – You may have been exposed to COVID-19 but have different antibodies that this research test is not designed to pick up.

      You should continue to follow all guidance on self-isolation and social distancing as appropriate. In addition, we encourage all study members to have the COVID-19 vaccine when offered, regardless of antibody results.

  • My antibody test results say I do not have clearly detectable antibody levels, but I previously had symptoms consistent with a COVID-19 infection. What does this mean?
    • This could be because:

      – The symptoms you experienced were the result of a flu or other bug, and you have not been exposed to COVID-19.

      – Antibody status (both the level of the antibodies and the type of antibodies) changes over time from the point of infection, and so antibody levels may have declined over time.

      – You may have been exposed to COVID-19 but have different antibodies that this research test is not designed to pick up.

      You should continue to follow all guidance on self-isolation and social distancing as appropriate. In addition, we encourage all study members to have the COVID-19 vaccine when offered, regardless of antibody results.

  • Who carried out this research project?
    • This research is funded by the UK Research Institute as part of the National Core Studies, designed to understand and defeat COVID-19. The research is being conducted by the National Child Development Study team at the Centre for Longitudinal Studies at UCL.

      We worked with a company called Thriva, who are a blood testing company. Your name and address were passed to Thriva so that they could send you a kit. They destroyed this information once your kit was posted. The blood test kit was returned to Thriva for analysis and the result of your test was provided to the National Child Development Study team. Thriva did not link your test result with your contact details.

      You can find out more about Thriva on their website.

      Thriva are contracted by the Department for Health and Social Care to conduct their antibody testing programme.

      We also worked with Kantar Public, the organisation that conducted our COVID-19 Surveys on our behalf. Kantar Public emailed you to invite you to take part in this research and also sent you your test result.

      Thriva and Kantar Public are contractually bound to UCL to keep your data safe and secure, and are accredited to data security standards.

  • What will happen to my test result?
    • The result of your test will be made securely available to researchers along with other information you have provided to the study, to look at the impact of coronavirus on people’s lives. Thriva will retain your test result along with a unique ID for 3 years after completion of the project. They will not retain any other information about you. We are also legally obliged to share the results of the antibody tests with Public Health England. Public Health England may share this information with equivalent bodies in Scotland, Wales and Northern Ireland. The results shared with these organisations will not include any information that would allow you to be identified.

  • What will happen to the blood sample I gave?
    • When we asked if you would be willing to take part in this project we told you that any blood left over after the antibody test has been conducted may be stored for future research.  We can now confirm that this will NOT happen.  Any blood which was left over after the antibody test was conducted was destroyed by the laboratory.

  • How will you keep my information safe?
    • Your personal details, the results of your antibody test and your blood sample will be all be treated in the strictest confidence in accordance with the General Data Protection Regulation (GDPR). There is full information about this on our website.

  • Who are the data controllers?
    • University College London is the Data Controller and is committed to protecting the rights of individuals in line with the Data Protection Act 2018 (DPA) and the new General Data Protection Regulation (GDPR).

      Your test result and unique ID will be retained by Thriva for three years. No other information will be retained by Thriva. The Department for Health and Social Care are the Data Controller for the data that will be retained by Thriva.

  • What if I change my mind after giving a blood sample?
    • You can contact us at ncds@ucl.ac.uk or 0800 035 5761.

      Please note that when we asked if you would be willing to take part in this project we told you that any blood left over after the antibody test has been conducted may be stored for future research.  We can now confirm that this will NOT happen. Any blood which was left over after the antibody test was conducted was destroyed by the laboratory.  None of your blood will be stored for future use.

COVID-19 Survey

  • What is the COVID-19 Survey?
    • We asked study members to complete a series of short questionnaires about their experiences during the coronavirus outbreak.  The first survey took place in May 2020, the second in October 2020, and the third in February 2021.

      The surveys provided study members with an important opportunity to contribute to our national understanding of how the coronavirus has affected the economy, society, and health. To find out more, please visit our COVID-19 Survey page.

  • What should I do if I am worried about coronavirus and its impact?
    • We hope that you and your loved ones are keeping well and healthy during the coronavirus outbreak.

      Please follow the latest government advice: www.gov.uk/coronavirus

      If you think you may have symptoms of coronavirus, please follow the advice and guidance from the NHS: www.111.nhs.uk (England, Wales and Northern Ireland) or www.nhs24.scot (Scotland). You can also call NHS by phoning 111 or phone your GP.

      Many people are experiencing difficulties or need some extra support due to the wider impact of the outbreak and restrictions imposed by the government, for example on finances, health and housing. Some of the organisations able to provide support and free confidential advice are listed below.

      Citizens Advice www.citizensadvice.org.uk – general issues including benefits, housing, debt and consumer issues.

      Family Lives www.familylives.org.uk – advice, information and support on a range of family issues including parenting, school and relationships. Call 0808 800 2222 or email askus@familylives.org.uk

      Drinkline is the national alcohol helpline. Call 0300 123 1110 (weekdays 9am to 8pm, weekends 11am to 4pm).

      Talk to FRANK www.talktofrank.com – advice on drugs and alcohol. You can text them on 82111, phone FRANK for free on 0300 123 6600 or get advice via webchat.

      Samaritans www.samaritans.org – if you have concerns, worries or are struggling to cope phone 116 123 at any time or email jo@samaritans.org

      Refuge www.nationaldahelpline.org.uk – national domestic abuse helpline. Call 0808 2000 247 at any time.   

  • What happens to the information I give?
    • The information you give us will be held securely and treated in strict confidence in accordance with the Data Protection Act 2018 and the General Data Protection Regulation. Any information that may identify you, such as your name, your contact details and any other details that may identify you, will be kept separate from your answers to the questionnaire. We hold any information which could identify you securely and never make this available to researchers.

      The answers you give in the questionnaire will be made available securely to researchers, along with other information held by the study about you, to look at the impact of coronavirus on people’s lives.

      The surveys have asked you to express in your own words how the Coronavirus outbreak has affected you. Responses to this question will also be made available to researchers and may also be used in communications about the survey and about research using the survey data. As with all the information you share with us, responses to this question will be de-identified before anyone can use them. You may be able to recognise your own response, but other people will not be able to identify you through your response.

      See the ‘Privacy and data protection’ FAQs for more details about how we use your personal information.

  • How do you keep my information safe?
    • All information collected by and added to NCDS is treated with the strictest confidence in accordance with the Data Protection Act 1998 and the General Data Protection Regulation (GDPR).

      See the ‘Privacy and data protection’ FAQs for more details about how we keep your data secure.

COVID-19 Survey – COVID symptom tracker

Why am I unique?

  • Why are NCDS study members so special?
    • Life for your generation is different to the lives of your parents and grandparents and to the lives of younger generations. So, we follow your lives to understand and learn from your special generation.

      You were educated during a period when there was considerable debate about the nature of primary schooling, selection for secondary school via the ‘eleven-plus’ was being abolished, and the comprehensive sector of secondary schooling was expanding. In 1965, when you were 7, the average size of your school class was 37, with almost 4 in 5 of you being in classes of more than 30 pupils, a much higher proportion than today’s children.  The school leaving age was raised to 16 in 1973 so you were one of the first year groups required to stay on at school for an extra year.

      Divorce rates began to rise in the 1960s but were still relatively low so most of you lived with both parents throughout your childhood. Children today are more likely to experience changes in their family structure – such as parents splitting up or repartnering – than when you were growing up.

      Improvements in both the quality and supply of housing after the Second World War meant that unsatisfactory accommodation was much less common than it had been among earlier cohorts. For example, whereas one in five of those born in 1946 had no bathroom at age 15, this was true for only one in fifty of you at age 16.  When you were young, living in council housing was far more common than it is today.  Over 4 in 10 of you lived in council housing at age 11, compared to 2 in 10 11-year-olds born in 2000.

      There have been enormous changes over the lifetime of the 1958 cohort in women’s experiences of employment. Awareness of gender inequalities increased greatly during the 1960’s and 1970s.  During the 1950s, equal pay for men and women in the civil service was established, but women in other occupational groups were expected to accept lower wages simply because of their sex. Gender equality was finally put on the statute book in the mid- 1970s just after the cohort members were leaving school. The Equal Pay Act came into force in 1975 around the same time that the Sex Discrimination Act of 1975 outlawed discrimination in the recruitment and promotion of single and married women in employment.

      These are just of the few of the differences between your generation and the lives of older and younger generations.  We want to know how your experiences have impacted on your life so far and how they will affect the rest of your life!

      By participating in NCDS you are acting as the voice of your generation. You are one of more than 18,500 people who have taken part over the years. Each and every one of you brings something unique to the study, and together, you represent the diversity of the NCDS generation. That’s why it’s so important that people from all different sorts of backgrounds continue to take part in the study. Without you, we don’t hear the whole story and the picture is not complete.

      To learn more about why the study was started, visit the ‘History of the study’ page.

  • Why have I been specially chosen?
    • In the 1950s there was a lot of concern about the number of babies born with abnormalities, or dying very early in life. Doctors and others wished to examine the factors associated with good health in mothers and babies.  It was decided that the best way to do this would be to study all the babies born in Britain in one week – and that just happened to be the week in 1958 when you were born! The midwives who delivered the 17,000 of you born in England, Wales and Scotland in that week asked your mothers if they would be willing to take part in the study which was then known as the Perinatal Mortality Study.  A further 1,100 who were born overseas during that same week in 1958 joined the study at age 7, 11 or 16.

      Seven years later it was decided that it would be very valuable to try and find as many of your families again, to see what had happened to you – how healthy you were, how you were getting on at school and so on.  Since then, as you know, the study has gone on to follow you throughout the rest of your childhood and on in to adulthood.

  • Why should I take part?
    • By taking part in NCDS, you’re helping to shape society and to make life better for your generation and the next. Politicians, teachers, doctors, nurses, social workers and others use findings from the study to improve services and policies to help people like you. Find out more about how the study has made a difference.

      It’s your story and only you can tell it. NCDS has been following you since you were born and we really want to continue following your lives.

      You’re unique and irreplaceable. If you choose not to take part, we cannot replace you with anyone else. Without you, we don’t have the whole story.

      It’s important that we understand what life is like for people from all different family backgrounds and all the different parts of the country.  That’s why we need as many of you as possible to keep taking part – each and every one of you brings something new to the picture and together, you represent the diversity of the NCDS generation.

  • Who else takes part?
    • More than 18,000 study members have taken part in NCDS since it started.

      As you were growing up, your parents or guardians will also have taken part in the study.  During your time at school information was also collected from your teachers.  For 1 in 3 of you, if you had a husband, wife or partner in 1991, when you were 33, we asked them to complete a questionnaire.  If you were in this group and had any children at this time they were asked to complete a series of assessments.

      In 2008, when you were 50, we asked your partners (and you) to give us permission to add information from health records held by the NHS and economic records held by the Department of Work and Pensions (DWP) and Her Majesty’s Revenue and Customs (HMRC) to the information you have given us in our surveys over the years.

Taking part

  • What will you ask me about?
    • At each survey, we’ll ask you about things that are relevant to your lives. When you were younger, we asked you about school, friends, family life and your hopes for the future. Now you are older, we’ll ask you about things like work and plans for retirement, health, and your caring responsibilities. We’ll write to you before each survey to tell you all about what is involved.

      If you move or if your contact details change, please let us know as soon as you can. This means we can make sure you get information about NCDS and that we can contact you to invite you to take part in each survey.

  • How often will the survey take place?
    • We’re interested in following your life story. We want to see how your life changes over time, and what your life is like at certain ages. In the past there were some long gaps between surveys, but the funding of NCDS is now more secure and since you were 42 we have carried out surveys every four to five years.  The last survey took place in 2013-14 when you were 55.  The current survey, the Life in Your Early 60s Survey, originally started in January 2020 but we only managed to interview a small number of you before we had to stop because of the pandemic.  We are relaunching the survey in spring 2021 and it is expected to run until December 2022. After that it is currently planned that surveys will take place every five years.

      The more information that the study gathers about your life over time, the more valuable it becomes. This is why we so value your unique and continued contribution.

      It is up to you to decide whether or not to take part in each survey. We will send you information before each survey to let you know what it will involve. If you move between surveys, it would be very helpful if you could contact us with your new address.

  • Why do you come to see me at certain ages?
    • We’re interested in following your life story. We want to see how your life changes over time, and what your life is like at certain ages. We choose key points in your life to visit you, which are interesting and important for particular reasons.

      NCDS is like a photo album not only of your life, but of all the other participants too. That’s what makes it so interesting, and this is why you are so important, as you cannot be replaced.

      The more information that the study gathers about your life over time, the more valuable it becomes. This is why we so value your unique and continued contribution.

  • How long will the study continue?
    • We hope that the study will continue throughout your life. A similar study, which started in 1946 is still continuing today.   The next survey will take place in your early 60s (61-63). After that, it is currently planned that surveys will take place every five years.

  • What if I no longer want to take part?
    • We really hope that you continue to take part. However, the study is voluntary so if you no longer want to take part in the next survey or in any future surveys, please contact us to let us know.

      If you are not sure whether you’d like to continue to take part or if you have any questions about taking part, please do not hesitate to contact us. We really value the contribution you make to the study and are always happy to talk to you and answer any questions you may have.

      Without you NCDS is not possible. If you decide not to take part, we can’t replace you with anyone else. Your unique contribution is incredibly valuable.

      To find out more about how your involvement helps make a difference to society visit the ‘What have we learned?’ pages.

  • Can I rejoin the study if I missed a previous survey?
    • Yes! We’d like everyone to take part each time we visit. But it’s up to you to decide whether or not to take part each time. If you miss a survey, you can still remain in the study and do the next survey.

      Even if you haven’t taken part for a while, we would love you to take part again. There’s a lot we can learn from how your lives have changed since you last took part even if we don’t have all the details of your life in between.

      Each survey is important because we focus on different aspects of your lives each time we get in touch. The more information that the study gathers about your life over time, the more valuable it becomes. This is why we so value your unique and continued contribution.

      If you are not sure about whether to take part or if you have any questions about taking part, please do not hesitate to contact us. We really value your contribution and are always happy to talk to you and answer any questions you have.

  • What information do you need from me?
    • If you move or if your contact details change, please let us know as soon as you can. This means we can make sure you get information about the study and that we can contact you to invite you to take part in each survey.

      During each survey, we will ask you for information about lots of different aspects of your life. We’ll write to you before each survey to tell you all about what is involved.

  • Should I tell other people I am part of NCDS?
    • It’s fine to tell family and friends that you are part of the study. We do advise you not to make this detail public though, for example on social media, as this could risk compromising your anonymity.

Keeping in touch

  • What sort of information will you send me?
    • We send birthday cards to study members every year and with this we will include updates about NCDS to make sure you know what is coming up, what we’ve learned and how the study has made a difference.  We will send additional information from time to time.

      Before each survey, we’ll write to you to tell you everything you need to know about what is involved. You might want to know when the survey is taking place, or how long it will take. We’ll always try to answer any questions you have. After each survey, we’ll also write to thank you for taking part.

      Between surveys, we will send you results from the study telling you what we have found out. It can take a while to put together all of the information you give us, so it is usually a few years after each survey before we can send you the results.

      We also keep the study website up to date with news and findings from the study.

  • How do I find out the results from NCDS?
    • We will write to you regularly with news from the study, telling you what we’ve found out about your generation. It can take a while to put together all of the information you give us, so it is usually a few years after each survey before we can send you the findings.

      The information from the study is being used all the time by researchers around the world, so new findings are always emerging. To find out more about the study so far, visit the ‘What have we learned?’ page.

  • Why is it important to keep my contact details up to date?
    • You’re such a valuable part of the study and we really value your input. We want to make sure that we have the right contact details so that we can keep you up to date with the study and contact you to invite you to take part in each survey.

      Updating your contact details is simple to do. The quickest way to update your details is completing this online form. You can also call us via the Freephone telephone number (0800 0355 761), or email us at ncds@ucl.ac.uk. Your information will be treated in the strictest confidence. From time to time, we may also send you a change of details form or card to help you to do this.

  • What do I do with the change of details form you’ve sent me?
    • You simply fill out the form that we sent you with any new information such as address changes, new phone and email addresses, or changes to a contact person’s details, and return it to us. If you prefer, you can update us with your new details by Freephone (0800 0355 761), or by email (ncds@ucl.ac.uk) and dispose of the form.

      If you cannot find your form, please confirm your contact details by Freephone (0800 0355 761) or by email (ncds@ucl.ac.uk). Your call and/or email will be treated in the strictest confidence.

How we find you

  • How do you find us if we move?
    • We need to keep in touch with as many of you as possible to make sure NCDS continues to represent the diversity of your generation. So, if we find out that you’ve moved, we will try to find out your new address.

      We first try to contact you through the direct links you have given us, such as phone numbers, email addresses and your postal address.

      If that doesn’t work, then we will try to contact any family members or friends whose details you have given us. If we still haven’t found you, we will check the electoral register and the telephone book, both of which are public records and available electronically. We may also try to find you using internet searches, by looking on social media sites and by using information held by government departments and agencies.

      All of this tracing is usually done before the survey starts so that we can provide interviewers with your current email address, telephone number and home address. However, if we have not been able to locate you, or if the interviewer finds out you have moved, then they will also try to find out where you’ve moved to. As well as trying to make contact by phone and in person, the interviewer may also call at your old address to speak to the new residents and call on neighbours. When we are looking for you, we won’t reveal to other people, apart from your family and friends, that you are part of NCDS.

  • Do you use information held by Government to find us?
    • We try to trace study members using information held by government departments and agencies.

      We securely transfer the personal details (name, sex, date of birth, and last known address) of study members to NHS Digital who use these details to identify our study members using the NHS Personal Demographic Service (PDS), a database which holds details of users of health and care services in England.  Once study members are identified on the PDS, NHS Digital periodically send us up-to-date addresses.

      NHS Digital will also inform us if you have died or moved out of the country.

      NCDS has also tried to trace study members using records held by the Department for Work and Pensions (DWP) and we may use other government databases in the future.

      This kind of personal information is not given out routinely by government departments and agencies. Special permissions are needed, and this is only done after a careful review of why this information is needed, ethical issues and data security procedures. For the information coming from the NHS, special approval under Section 251 of the NHS Act 2006 from the NHS Confidentiality Advisory Group and NHS Digital Data Access Advisory Group is needed.

  • Do you use the internet and social media to find us?
    • Sometimes we try to find study members using the internet and social media. This may involve carrying out internet searches, for example using Google, and searching on Facebook and other social media sites. We also know that it can be difficult to identify people accurately on the internet and social media. So, whenever we are searching in this way, we will not reveal the name of the study in case the person we contact isn’t one of our study members.

  • What do I do if I move?
    • It would be very helpful (as well as saving us time!) if you could contact us to let us know where you have moved to. This is simple to do. All you have do is complete the online contact form, call us via the Freephone telephone number (0800 0355 761) or email us at ncds@ucl.ac.uk.  Your information will be treated in the strictest confidence.

  • What if I leave the country?
    • If you move abroad please let us know your new contact details, including your address, telephone number and email address so that we can keep in touch and send you letters and updates.

      You can contact us with these details using the online form, by Freephone (0800 0355 761), or by email (ncds@ucl.ac.uk).   Your information will be treated in the strictest confidence.

      It is not usually possible for study members living abroad to take part in the surveys. However, you can re-join the study and be included in the next round of interviews if and when you return to Great Britain.

      In the future, it may be possible for study members living abroad to conduct the survey remotely through web or telephone interviews.

Privacy and data protection

  • How will my information be used?
    • We hold your personal details (your name, full address, telephone numbers, email addresses, etc.) in a secure and restricted administrative database, to which only a small number of authorised staff have access. We use your personal details so that we can keep in touch with you, for instance to send you information on how the data you provide to us in the survey is being used by researchers, and so that we can contact you during each survey. We never make these personal details available to researchers or to any third parties who might use them for marketing purposes.

      – We send updates to you to keep in touch, and we use external mailing companies for this. We send them your contact details securely, using an encrypted online portal, to enable them to send out mailings to you. The surveys that you take part in are conducted by external organisations contracted by us. NatCen Social Research and Kantar are the independent research organisations that have been contracted to carry out the Life in Your Early 60s Survey, on behalf of the Centre for Longitudinal Studies at University College London. Kantar are also conducting the COVID-19 Surveys.  We send them your contact details securely, using an encrypted online portal, to enable them to approach you to take part. Once the survey has been completed, they return us your responses securely, also using an encrypted online portal.

      – When we receive your survey responses, your information is split into two parts for storage at the Centre for Longitudinal Studies (CLS). Your personal details are removed from the survey responses that you provide. Your survey responses are held on a separate secure research database. They do not contain any personal details, and are held together with the survey responses from thousands of other participants. This research data is then deposited with the data stores by CLS. The deposited research data does not contain any personal details that would enable you to be identified at individual level. It is made available to researchers who must register with the relevant data store and must work under a strict licence agreement.

      – If you agree to take part in the COVID-19 antibody testing project, we will provide your name and address to Thriva, the blood testing company that we are working with on this project, so that they can send you a blood collection kit. This information will be supplied via a secure online portal. Thriva will destroy the file containing these personal details once the blood collection kits have been posted.

      In our surveys we sometimes ask you to describe your experiences in your own words. Your responses are included in the survey data that we make available for research (as described above). They may also be used in communications about the research and study data. As with all the information you share with us, your responses to questions like these are de-identified before anyone can use them. You may be able to recognise your own responses, but other people will not be able to identify you through your responses.

      The personal information you provide us will not be used to make any decisions (automated or otherwise) which could affect you in any way – it will only be used for research purposes.

  • Who receives my personal data?
    • We share your personal data with those external organisations we have contracted to either carry out our surveys, or send you mailings between each survey. NatCen Social Research and Kantar Public are the independent research organisations that have been contracted to carry out the Life in Your Early 60s Survey, on behalf of the Centre for Longitudinal Studies at University College London. Kantar are also conducting the COVID-19 Surveys. We use external companies to carry out the mailings between each survey.

      If you agree to take part in the COVID-19 antibody testing project, we will provide your name and address to Thriva, the blood testing company that we are working with on this project, so that they can send you a blood collection kit. This information will be supplied via a secure online portal. Thriva will destroy the file containing these personal details once the blood collection kits have been posted.

      These external organisations are contractually bound to UCL to keep your data safe and secure, and are accredited to data security standards. The organisations we contract may appoint sub-contractors to send you letters, emails or text messages. Sub-contractors will always be contractually bound to comply with data protection law.

  • How do you keep my data secure?
    • We go to great lengths to maintain your privacy. We respect that you have voluntarily given information to us on the basis that we protect your rights. We keep any information which could identify you in a secure location.

      At the Centre for Longitudinal Studies (CLS), the study data is managed by two different teams, all of whom have signed strict confidentiality contracts and can only access this information for limited purposes. One team deals with your personal contact information to make sure we are able to stay in touch with you. The other manages all the other information you provide in the survey. Neither team has access to both.

      The organisations which carry out the surveys are also contractually bound by very strict confidentiality and data security agreements.

      The collected survey responses are made available to the research community through the data stores used by CLS. This research data does not contain any personal details that are identifiable at individual level. The data is only made available to researchers who register with the relevant data store and they must work under a strict licence agreement. No-one using the data will know who the information has come from, or who is in the study.

  • How long will you hold my data for?
    • The purpose of the National Child Development Study is to understand the whole picture – of your lives individually, and of your generation as a whole. The aim is to follow your whole life’s journey. For this reason, we have not set a time limit for how long we will keep your data. This applies to both data collected in the surveys and any data linked in to your survey data. It is very important for us to keep your data safe.

  • Can I access the data I have provided to the study?
    • Under data protection legislation you can get a copy of the information you gave to the surveys. Everyone has the right to access any personal data that is being kept about them. You can do this by making what is known as a subject access request. You should send your request to ncds@ucl.ac.uk

      Additionally, you can download the study data from UK Data Service by registering and signing the special confidentiality contract. However, unless you are a professional researcher the data may be difficult to understand as they are in a complex format. And you won’t be able to identify yourself as the data are de-identified.

  • Are my contact details transferred to other countries?
    • Your contact details are not transferred outside the European Economic Area (EEA), to ensure that they are protected by the strong EEA data protection laws.

  • How do I withdraw from the study?
    • You have the right at any time to withdraw from the study.  Information which the study has already collected about you in the past will be retained.  You will not be invited to part in any future surveys and we will not contact you for any other reason.   We will keep your contact details as a historic record that you were once a member of the study.

      If you wish to withdraw from the study you can let us know in various ways:

      Call: 0800 035 5761
      Email: ncds@ucl.ac.uk
      Post: National Child Development Study, Centre for Longitudinal Studies, UCL Social Research Institute, 20 Bedford Way, London, WC1H 0AL

  • How many people have used the data?
    • There are lots of researchers who analyse the data from NCDS every year. Anyone using the data needs to sign a special confidentiality contract which states that they will only use it for research.

  • What is GDPR?
    • The General Data Protection Regulation – https://www.eugdpr.org/, sets out our duties and responsibilities when we process and use your personal data. GDPR was approved by the European Parliament on 14th April 2016 and came into force on 25th May 2018. Because the GDPR is a regulation, it is directly binding and applicable. The new Data Protection Bill (2018) brings the GDPR into British law, and is part of the Data Protection Act 2018.

  • How does GDPR affect the National Child Development Study?
    • The National Child Development Study collects personal data from you, so it needs to be compliant with GDPR, which sets out the duties and responsibilities we have to you, and your rights regarding the personal data that we hold and process.

      The study is managed by the Centre for Longitudinal Studies (CLS), which resides at University College London (UCL). UCL is the ‘Data Controller’ for this study. We contract with different external organisations who carry out our surveys on our behalf.  These organisations act as ‘Data Processors’. For the Life in Your Early 60s Survey, the fieldwork is contracted to NatCen Social Research. We use external mailing companies to post study updates to you between each survey, and they also act as a data processor.

      The study is mainly funded by the Economic and Social Research Council (ESRC). The aim of the study is to generate data for research purposes and its funders and UCL are Public Authorities/ Bodies – this is regarded as a ‘Task in the Public Interest’ under GDPR – and is the lawful basis on which we are permitted to process your personal data.

      In addition, we comply with all the relevant legislation on protection of confidentiality. We have received externally certified accreditation to the NHS Digital Information Governance Toolkit standard, which allows us to hold data from the NHS, and which also provides you with assurance that your data is secured and protected in the strongest possible manner.

  • What is the legal basis on which you can process my personal data?
    • The National Child Development Study is funded mainly by the Economic and Social Research Council (ESRC). The aim of the study is to generate data for research purposes and its funders and UCL are Public Authorities/ Bodies – this is regarded as a ‘Task in the Public Interest’ under GDPR – and is the lawful basis on which we are permitted to process your personal data.

  • Who is the Data Controller?
    • University College London is the Data Controller and is committed to protecting the rights of individuals in line with the Data Protection Act 2018 (DPA) and the new General Data Protection Regulation (GDPR).

  • Who is the Data Protection Officer?
    • If you want to request further information about our privacy notice you nay contact the University College London Data Protection Officer through data-protection@ucl.ac.uk

  • Is this Privacy Notice likely to change?
    • At CLS we will keep our privacy notice under regular review and it will be updated at least annually.

      If you want to request information about our privacy notice you can contact us via the details on our website or via our Data Protection Office at data-protection@ucl.ac.uk

  • How do I make a complaint?
    • If you wish to raise a complaint or a cause for concern in relation to the study you can get in contact with us in a range of ways:

      Call: 0800 035 5761
      Email: ncds@ucl.ac.uk
      Post: National Child Development Study, Centre for Longitudinal Studies, UCL Social Research Institute, 20 Bedford Way, London, WC1H 0AL

      If you are concerned about how your personal data is being processed, you can contact the UCL Data Protection Office at: data-protection@ucl.ac.uk. If you remain unsatisfied, you may wish to contact the Information Commissioner’s Office (ICO). Contact details, and details of data subject rights, are available on the ICO website: https://ico.org.uk/

  • Why do you need to know about “Stable contacts”?
    • We ask you to give us contact details for your partner (if you have one) and someone who you don’t live with (e.g. a relative, a neighbour, a friend) so that we can get in touch with them if we are unable to contact you directly e.g. if you’ve moved house. We refer to these people as ‘Stable Contacts’ and we only hold the contact details of these other people for that purpose – and this is the only reason we would contact them. You should let them know that you have given their details to us.

  • Why do you ask questions about my partner and other members of my family?
    • Our surveys often include questions about your partner, parents, children and other people who you may live with.  This is important because family circumstances have a huge impact on people’s lives.  We ask for some personal information relating to family members including names.  This is so that in later surveys we can refer back to them and ask if their circumstances have changed.  However, whilst no personal information relating to your family members is included in the data made available to researchers, you should let these family members know that you have given their details to us.

      We also ask for your partner’s contact details so that we can get in touch with them if we are unable to contact you directly e.g. if you’ve moved house.  We only hold your partner’s contact details for that purpose – and this is the only reason we would contact them. You should let them know that you have given their details to us.

About adding other information

  • Do you add any other information to my data?
    • Government departments and agencies hold information about people, which they use for routine administrative purposes. From time to time, we add information from these routine administrative records to the study data. We only do this if we have permission from you. Adding this information to the survey data helps to build up an even fuller picture of participants’ lives. This makes NCDS even more valuable as it means researchers can use it to answer even more questions about society.

      In the age 50 Survey in 2008 we asked you for your permission to add information from health records held by the NHS and economic records held by the Department for Work and Pensions (DWP) and Her Majesty’s Revenue and Customs (HMRC) to the information you have given us in our surveys over the years. If you lived with a partner at the time we also asked them for permission to add information from their records.

      As part of the Life in Your Early 60s Survey, if you had not previously given your permission to add this information, we will ask your permission again. If you live with a partner who has not previously given permission, we will also ask their permission to add information from their records.

      To add other information to your data, if you have given us permission, we will send securely your personal details (such as name, sex, date of birth, address, NHS and National Insurance number – if available) to the government department or agency (or to a trusted third party employed by the government department or agency). We don’t send any  other information about you, or any of your answers to the surveys. The government bodies or agencies only use these details to identify the records in their systems and then send the information from these records to us or to the data store where we deposit the study data.. These departments and agencies are trusted to keep your personal details secure (and are likely to already have your personal details) and have robust systems to manage this.

      When the information from the records is sent to us or to the data store, it is added to the information collected in the study, and made available to researchers under restricted access arrangements. Names, addresses, National Insurance and/or NHS numbers, are never disclosed to data stores or to researchers.

      The permissions for adding other information can be changed or withdrawn at any time, without giving us any reason. This can be done by writing to us at: National Child Development Study, UCL Social Research Institute, 20 Bedford Way, London, WC1H 0AL, or by emailing the NCDS team at ncds@ucl.ac.uk.

      We also add mortality data – NHS Digital periodically inform us if study members have died. The files we receive from NHS Digital tell us when study members have died (month and year) and the cause of death.  Receiving this information helps us ensure we do not try to contact people who have died. We also use it for important research. In order to receive this information from the NHS we have to obtain special approval under Section 251 of the NHS Act 2006 from the NHS Confidentiality Advisory Group and the NHS Digital Data Access Advisory Group.

      We also add information, which is not about you individually, but is about, for example, the school you went to or the area you live in. Any information like this provided to researchers is de-identified and cannot be used to find out who is in the study.

      Watch our video to find out more about adding other information.

  • What other information have you added to my data?
    • Information added from mortality records

      NHS Digital periodically inform us if study members have died. The files we receive from NHS Digital tell us when study members have died (month and year) and the cause of death. Receiving this information helps us ensure we do not try to contact people who have died. We also use it for important research. In order to receive this information from the NHS we have to obtain special approval under Section 251 of the NHS Act 2006 from the NHS Confidentiality Advisory Group and the NHS Digital Data Access Advisory Group.

      Information added from routine health records

      At the Age 50 Survey, we asked you (or your partner – if you had one) if we could add to the survey data, some information held by the National Health Service (NHS) about your health, such as visits to the doctor, nurse or midwife, hospital attendance or admission and the dates of these visits, health diagnoses or conditions, medicines, surgical procedures or other treatments you have received.

      If you gave us permission, we are now starting to get some information about your health and have added some information from your hospital records. We have not yet added this information for your partner (if relevant).

      As part of the UK Longitudinal Linkage Collaboration, we are adding other information from your NHS health records to support research into COVID-19. This includes your COVID-19 test results, if you had one, and your vaccination status. We are only doing this if you have given us permission to add information from your health records. If you took part in the COVID-19 web surveys and have used the COVID-19 symptom tracker app, the data collected by the app will be linked to your survey data unless you have opted out of this. See the FAQs, ‘COVID-19 Survey – COVID symptom tracker’.

      These records, combined with the information you have given us during the surveys will allow researchers to look in greater detail at what affects your health, including the factors that prevent or contribute to poor health, and how your health can affect other aspects of your life. This will help policymakers improve services for you and other generations.

      Information added from routine economic records

      At the age 50 survey we also asked if we could add to the survey data information held about you (or your partner – if you had one) by:

      – the Department for Work and Pensions (DWP), such as benefit claims and periods on employment programmes, and

      – the Her Majesty’s Revenue and Customs (HMRC), about employment, earnings, tax credits and occupational pensions, and National Insurance Contributions.

      We are now in the process of adding this information from your records to the survey data. We have not yet collected this information for your partner (if relevant), but we are intending to add information from their records in the near future too.

  • How long will my permission last?
    • The administrative information we add relates to your past, present and future circumstances. We have not put an end date on the permissions that you give as we do not know exactly when we will add this information. Any permission you give for adding administrative information to the information we collect as part of the study will remain valid and we will collect these records on an ongoing basis – unless you tell us to stop.

      As our aim is to follow your whole life’s journey, we have not set a time limit for how long we will keep your records.

  • What if I don’t want you to add other information about me anymore?
    • You can withdraw your permission to add information from your administrative records at any time, without giving us a reason. If we have already added some of your information, it will continue to be used for research purposes only, however, we will not add any further information from your records. To change your permissions, write to us free of charge to: National Child Development Study, Centre for Longitudinal Studies, UCL Social Research Institute, 20 Bedford Way, London, WC1H 0AL, or email the NCDS team at ncds@ucl.ac.uk.

  • Who will use the linked survey and administrative information?
    • The information will be made available to researchers under restricted access arrangements via the UK Data Service (UKDS) or similar organisation. Researchers based within the Centre for Longitudinal Studies may be given access to the linked data via the highly secure UCL Data Safe Haven (DSH). Access to the data via the UKDS or the DSH will only be granted in these secure research environments and after a successful application procedure, assessed and approved by the CLS Data Access Committee team and the relevant government department or agency (if required). This is to make sure this information is used responsibly and safely.

      Information provided to researchers will never contain your name, address, date of birth, NHS or NI number.

Making the data available for research

  • Where do researchers go to get the study data?
    • We deposit your de-identified survey responses with the UK Data Service, based at the University of Essex, and the UK Longitudinal Linkage Collaboration, based at the University of Bristol. Making the study data available through these central data stores makes it easier for scientists from different sectors, working in a wide variety of fields, to access and use the information in their research.

  • What is the UK Data Service?
    • The UK Data Service is funded by the Economic and Social Research Council (ESRC) to meet the data needs of researchers, students and teachers from all sectors. The UK Data Service collection includes major UK government-sponsored surveys, cross-national surveys, longitudinal studies, UK census data, international aggregate data, business data, and qualitative data. We deposit de-identified data from all the studies that we run, including NCDS.

  • What is the UK Longitudinal Linkage Collaboration?
    • The UK Longitudinal Linkage Collaboration (UK LLC) is a UK government-funded initiative that will help researchers investigate the effects of COVID-19 and its implications for public health policy. It is part of the National Core Studies, a major UK government-funded research initiative.

      Across the UK, thousands of people are taking part in longitudinal studies like NCDS, which follow participants over time. At the Centre for Longitudinal Studies (CLS), we run four studies – NCDS, the 1970 British Cohort Study, Next Steps, and Child of the New Century (also known as the Millennium Cohort Study). There are many other studies in the UK, similar to these. Among others, these include, Avon Longitudinal Study of Parents and Children, Generation Scotland, National Survey of Health and Development, Southall and Brent Revisited, Twins UK, UK Biobank and Understanding Society.

      Each study collects vital information which allows researchers to answer key questions about the factors which affect people’s experiences and circumstances throughout their lives. The UK LLC will bring together de-identified data from many of these studies, including the four studies we run at CLS, into a single database which will be available to approved researchers for approved research projects. Combining the data from these studies together will make the data even more valuable, creating a resource which will further increase the potential for research.

  • How do these data stores keep my information safe?
    • Access to your survey responses by staff at the data stores is limited to those who manage and prepare the data for access and to those who keep the system safe.

      The data are de-identified at all times, and steps are taken to ensure confidentiality and data security. The data services have leading Information Security accreditation (ISO27001) and are regularly audited by IT professionals, the NHS and UK statistics agencies.

      Legitimate researchers are able to apply to access the data under a strict licence agreement and required to use the data for legitimate purposes. Where your routine administrative records have been linked to your survey responses, additional measures are in place, including limiting access to researchers based in the UK and to researchers who need to demonstrate that they will be competent and safe users, that their project is in the public interest, is not run for profit making purposes, and will meet the requirements of CLS and the owners of the administrative data.

About social research

  • What is social research?
    • Social research is research conducted by social scientists, such as anthropologists, economists, psychologists and sociologists. It aims to understand human behaviour, mental processes, and how people interact in society. Researchers apply different statistical methods to data in order to do this. The objective of their research is to understand how and why people fare differently in life, and therefore how policies can be designed to help improve the lives of some.

  • What is survey research?
    • Survey research involves collecting information from a sample of individuals through their answers to questions. Surveys are used in lots of parts of our society, for example by retail companies to understand shoppers’ preferences, in polls to reveal people’s voting intentions, and in studies such as NCDS. Surveys are carried out in different ways – including face-to-face or over the telephone with an interviewer, or on the internet by self-completion.

  • What is a birth cohort study?
    • A birth cohort study follows a group of people that were born at a similar date or period of time – be it a day, month, year or decade, for instance. It follows these people throughout their lives, and collects information from them at particular ages. By following the same people over time, these studies are able to tell us how and why people change as they get older. NCDS is a birth cohort study following people born in one week in 1958.

  • Why are birth cohort studies so valuable?
    • Our society is changing fast. Findings from cohort studies are used to chart and understand how society has changed over the years, and how life experiences are different for each generation. They help understand the impact of societal trends such as our ageing population and the growth in lone-parent and step-families, and changes such as growing employment insecurity.
      Cohort studies help understand that change. Evidence from cohort studies have contributed to many policy decisions in diverse areas – such as increasing the duration of maternity leave, raising the school leaving age, updating breast feeding advice given to parents.

Genetics and DNA

  • How was my DNA obtained?
    • In 2002-3, NCDS carried out its first biomedical survey. As part of this survey, nurses took a blood sample from study members who gave their consent. White blood cells from this blood have been stored to provide a renewable source of DNA for non-commercial research.

      In the Life in Your Early 60s Survey, during your nurse visit, we will ask for a blood sample and for your permission to extract DNA from this to store for future use.

  • I don’t remember giving consent for my DNA to be used.
    • Not everyone in NCDS was part of the biomedical survey at age 44, and of those 9,377 who did take part, a total of 8,404 gave consent to their DNA being used. Therefore you could have taken part but chosen not to give your permission for DNA extraction.

      In the Life in Your Early 60s Survey, we will ask your permission to extract DNA from your blood sample if you agree to give one. You can check the consents you give or have given in the past by contacting us.

      If you have previously given your consent to extract DNA, but now you have changed your mind, let us know and we will destroy your samples. You can check what consents you have given at any time.

       

  • Who has access to my DNA?
    • To use DNA samples, researchers must first get clearance from a medical ethics committee. DNA extracted from blood collected during the first NCDS biomedical survey in 2002-3 can only be used for non-commercial medical research whereas DNA extracted from blood collected during the Life in Your Early 60s Survey may potentially be used by researchers from commercial organisations. DNA collected in either survey may also potentially be used by researchers outside of the UK.

      All DNA samples are barcoded with a unique serial number so that the anonymity of study members is preserved.

       

  • Can I get information about my genetic profile from CLS?
    • No, it was important that when we collected the DNA sample that we gained consent from you to use the DNA for research purposes, but also guaranteed not to reveal your individual results. This is because the way that this was done does not meet the very high clinical standards that would be required to give you accurate information about your own genetic make-up. It is also important to remember that very few diseases are only linked to genes and there is almost always an environmental component too. This means that those who are genetically susceptible to the disease will not necessarily contract the particular disease.