FAQs

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

Search FAQs

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 surveys 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 most recent survey took place in 2013-14 when you were 55.  The next survey will take place when you are 60!  After that it is currently planned that surveys will take place every 5 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 when you are 60 and 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 in the prepaid envelope.  Where there are no changes to your details we would like you to send us back the form anyway to indicate that we have the correct information on your record. 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?
    • From time to time we try to trace study members using information held by government departments and agencies. So far, NCDS has tried to trace study members using records held by the Department for Work and Pensions (DWP) and the NHS (via the NHS Central Register). We may use other government databases in the future.

      The NHS Central Register is a database of GP registrations and is held by NHS Digital (formerly the Health and Social Care Information Centre). We would also find out if you died or moved out of the country from this register.

      Whenever we do this, we securely transfer the personal details (name, sex, date of birth and last known address) of study members to the government department or agency. They use these details to identify our study members and then send us their up-to-date addresses. They do not retain the personal details sent to them.

      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 do you keep my data safe?
    • 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 that could identify you in a secure location.

      At the Centre for Longitudinal Studies, 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.

      Personal details, such as names, dates of birth and addresses, are removed before data is released to researchers. No-one using the data will know who the information has come from, or who is in the study.

  • Who can access my data – will they see my name?
    • At point will your personal details such as your name or address, or any identifiers such as your NHS number or National Insurance number, be included in the data made available to researchers. This is to protect your privacy and make sure that you cannot be identified. No one using the data will know who the information has come from, or who is in the study.

      Researchers using the data also need to sign a special confidentiality contract that states that they will only use it for research and not for any other purpose.

  • 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.

  • Can I access the data?
    • Yes. Under data protection legislation you can obtain a copy of the information you gave to the surveys.

      If you register and sign the special confidentiality contract you can download the study data from UK Data Service. 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 personal details, such as your name or address, are not included in the data.

  • Can I withdraw my data?
    • Yes. Under data protection legislation you can ask us to withdraw your data. We will remove your information from our computer systems and stop providing it to researchers. Please send an email to ncds@ucl.ac.uk. Your email will be treated in the strictest confidence.

  • How long will you keep my data?
    • The purpose of NCDS 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 information linked in to your survey data. It is very important for us to keep your data safe.

  • What does the merger between IOE and UCL mean for NCDS?
    • NCDS is run by the Centre for Longitudinal Studies at the Institute of Education (IOE). Following a final decision by the IOE Council on 25 November 2014, UCL and the IOE merged on 2 December 2014. The IOE joined UCL as a single Faculty School, known as the UCL Institute of Education. The Centre for Longitudinal Studies has continued its work as usual following the merger, and has kept the same form within the new UCL Institute of Education.

      Keeping your personal information safe is a top priority. From 2 December 2014, the same team of people at the Centre for Longitudinal Studies have been managing your personal information. The reasons why we collect your data will not change as a result of the merger, and the measures we put in place to ensure that this information is held securely will not be affected.

      However, it will now be UCL that will ultimately be responsible for ensuring that all personal information is processed in accordance with the Data Protection Act (1998) and the UCL Data Protection Policy (which you can read on the UCL website). UCL is registered with the Information Commissioner’s Office, and you can find more detail about what this means for UCL on the Information Commissioner’s Office website.

      If you have any concerns or questions about any personal information we may hold on you, or how personal information will be collected or used following the merger, contact us on ncds@ucl.ac.uk or UCL’s data protection team, data-protection@ucl.ac.uk.

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.

Adding information to your data

  • What information from my health records do you want and why?
    • 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

      Why is this information useful?

      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?
  • What information from my economic records do you want and why?
    • Department for Work and Pensions (DWP) records

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

      Her Majesty’s Revenue and Customs (HMRC) records

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

      Why is this information useful?

      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.

      We are therefore asking for your permission to gain access to the economic administrative data held about you by HMRC and DWP. This includes information about any tax credits that you receive, your National Insurance contributions (critical to working out pension entitlement), your earnings (which are used to work out entitlement to things like Child Benefit, Student grants and loans for your children and child tax credits), benefits that you receive as well as information about participation in DWP programs such as the New Deal.

      This 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?
  • Why did you ask for my partner’s records?
    • The circumstances of those around you 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 hugely 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 their records will give us a much better understanding of your family circumstances.

  • How will information from my records be added to the study data?
      1. CLS will temporarily provide your personal details (name, address, date of birth, National Insurance Number) to the NHS, DWP and HMRC. No other information collected in the survey or held by CLS is passed to the NHS, DWP or HMRC.
      2. The NHS, DWP and HMRC will use your personal details to identify the correct records.
      3. The NHS, DWP and HMRC will send your records to CLS who will be the data controller of this information.
      4. The NHS, DWP and HMRC will delete your contact details once they have sent your records to CLS and will not use them for any other purpose.
      5. CLS will link your records to your anonymised study responses.
      6. Any researchers wishing to use this information must apply to CLS.
  • Who will have access to my records and how will the information be used?
      • No personal information (e.g. names and addresses) is provided to researchers.
      • Information collected from records will be held securely with no personal identifiers (e.g. name, address) – like all other data collected by NCDS.
      • The information cannot and will not be used to identify the health / financial circumstances of any named individual.
      • The 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.
      • Information from your records will only be used by academic and social policy researchers for non-commercial research.
  • What if I don’t want to give my permission?
    • You do not have to give your permission.  If you do not give your permission you can still continue taking part in the study.

  • What if I change my mind?
    • You can withdraw permission at any time for your NHS, DWP or HMRC records to be added to your study answers.

      This can be done by writing to Freepost RTKJ-BBSL-CJXR,, National Child Development Study, UCL Institute of Education, 20 Bedford Way London, WC1H 0AL.

  • What information from routine health records have you added to my data?
    • At age 50 survey, we asked you 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.

      We are now starting to get some information about your health, which means researchers will be able to look in greater detail at what affects your health – what factors prevent or contribute to poor health, and how policy makers might improve things for you and other generations – how health conditions can be treated or managed more effectively.

      In our information leaflet about data linkage, entitled ‘Health and Economic Records – Information on Giving Consent’ we said we would like to get information from ‘routine medical and other health related records’. This means that we need to send securely personal data to the where your health records are kept to match them to you.

      With your permission, we send your unique survey ID, name, sex, address, date of birth to NHS Digital (formerly the Health and Social Care Information Centre – HSCIC). Where available, we will also send your NHS number. These details are provided to help identify your records accurately. We will not send your survey responses or other information about you.

      For those of you in England, NHS Digital hold all hospital admissions and outcomes data from the Hospital Episode Statistics (HES) dataset and will link this information to individual participants in the study, who have consented to this data sharing. For those of you in Scotland and Wales your medical records are held by NHS Scotland and NHS Wales, respectively.

      When your health records have been identified the file containing your personal details is destroyed. Just your unique survey ID and the information extracted from your administrative records are sent back to the NCDS team. Your unique survey ID is a string of letters and numbers created just for you which can be used instead of your name or date of birth to identify your study data without identifying you. The NCDS team then match the information from your health records to your survey responses using your unique survey ID. At no point will your name or address be included with the matched data.

      To keep your data safe, the information we exchange with NHS Digital is encrypted and sent via secure transfer systems, in line with the most up to date security protocols and procedures.

      The NCDS team will add information from your health records for the duration of the study or until you tell us to stop.

  • What if I don’t want you to link to my health records anymore?
    • Any permission you give will remain valid for the duration of the study and we will collect these records on an ongoing basis unless you tell us to stop. You can withdraw your permission to add information from NHS records at any time, without having to give a reason. This will not affect the medical care you receive. This can be done by writing to: Freepost RTKJ-BBSL-CJXR, National Child Development Study, Centre for Longitudinal Studies, UCL Institute of Education, 20 Bedford Way London WC1H 0AL.

  • Who will use the data?
    • The linked health and survey data will be made available to researchers and policy makers via the UK Data Service for research purposes only. Researchers will only be given permission to use the data after successful application to ensure that the information will be used responsibly and safely, presents a strong scientific case and explains the potential impact of the research and its wider value to society.

      Your name, addresses, National Insurance number and NHS number are never included in any data made available to researchers via the UK Data Service, which ensures that no individual can be identified from the data or the research findings. All information collected by and added to NCDS is treated with the strictest confidence in accordance with the Data Protection Act 1998.

Genetics and DNA

  • How was my DNA obtained?
    • In 2002-03, NCDS carried out a special 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.

  • I don’t remember giving consent for my DNA to be used.
    • Not everyone in NCDS was part of the biomedical survey, and of those 9,377 who did take part, a total of 8,404 gave consent to their DNA being used. It therefore may well be that you are in the study but that we do not hold your DNA.

  • Who has access to my DNA?
    • The samples of DNA from study members are only available to those carrying out non-commercial medical research. Any researcher who needs to use the DNA samples must first get clearance for their project from a medical ethics committee. The samples of DNA have all been bar coded 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.