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.

Part of your blood sample (with your permission) will be sent to a laboratory to be tested for the following:

– Total cholesterol and high density lipoprotein (HDL) cholesterol. Cholesterol is a type of fat present in the blood, related to diet. Too much cholesterol in the blood increases the risk of heart disease. However, there are two types of cholesterol; HDL is the ‘healthy’ type, which helps to keep ‘bad’ cholesterol levels lower.

– Glycated haemoglobin. This is an indicator of long term blood sugar levels and is linked to the risk of developing diabetes.

– Triglycerides. Triglyceride levels are associated with cardiovascular disease and are also important to help us work out how much low-density lipoprotein (LDL) is in your blood. LDL is the ‘bad’ type of cholesterol.

– C-reactive protein (CRP). This is a measure of inflammation in the body and can help predict the risk of developing diseases such as cardiovascular disease, diabetes and cancer, as well as mental health issues.

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.

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 you with the results of genetic testing.  The tests that will be done on your DNA are for research purposes, and are not the same as clinical genetic tests. The results cannot be used for individual diagnosis. As such, we will not routinely feed back your individual results, but we will share the broader findings from the research with all study members, in our regular mailings and on our website.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

If we are unable to find you in any other way we use the services of AFD Software, a company which specialises in contact-details validation. Read more about AFD Software on their website.

We securely transfer the personal details (name, sex, date of birth, and last known address) of study members to AFD. AFD then use these details to identify our study members in a range of other databases which are managed by other companies including Royal Mail and Experian. When study members are successfully matched to another database then AFD will supply us with updated addresses and we will use these to try and reach you.

No information other than contact details is shared with AFD. AFD do not have access to any other information which may be held in the other databases that they search. AFD are contractually obliged not to use the information we share with them for any other purpose and they destroy all data after each matching exercise is complete.

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.

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.

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.

These have been moved to our new Privacy section.

Information from administrative records held by Government departments and agencies

Government departments and agencies hold information about people, which they use for 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 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.

If you have given us permission, we will securely send 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.

Mortality information from the NHS

NHS Digital periodically informs 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.  We do not ask your permission to receive this information but in order to obtain it we have to be granted special approval under Section 251 of the NHS Act 2006 from the NHS Confidentiality Advisory Group and the NHS Digital Independent Group Advising on the Release of Data also need to grant us permission.

During surveys we have asked you for your permission to add information from your health records to the information you have provided us during surveys. We will receive information about your death even if you do not give us permission to add information from your health records. We will also continue to receive this information if you withdraw from the study, unless you request that the data you have provided to the study is deleted.

Please note that if you opt out of having your records added to the national GP database, or of any other health database, via the NHS national data opt out then the NHS will not send us this information.

Information about where you live

We use your address (and previous addresses) to add information about where you live such as the local environment, weather, pollution and the facilities available (e.g. shops and green spaces).  The information that we add may be about your local area as a whole, your street or sometimes your specific address.  Where we live has a huge impact on many aspects of life, and so understanding more about your area and where you have lived previously, is hugely useful for research.  For example, research using NCDS has used area information from the Census to show that living in deprived areas is linked to poorer health.

All of the information provided to researchers is de-identified and does not allow individuals, or addresses to be identified.

We do not ask your permission to add this information because the data is not individual level information about you. Usually, this information is publicly available and adding this information does not require us to share any of your personal information with any other organisations.

However, if you would prefer that we don’t add any information about your area to your study record then please let us know, by writing free of charge to: National Child Development Study, Centre for Longitudinal Studies, UCL Social Research Institute, 20 Bedford Way, London, WC1H 0AL, or emailing the NCDS team at ncds@ucl.ac.uk.

Other information

We may also add other information which is not about you individually, but is for example about the school or University that you went to.

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.

During surveys we have asked you for your permission to add information from your health records to the information you have provided us during surveys. We will receive information about your death even if you do not give us permission to add information from your health records. We will also continue to receive this information if you withdraw from the study, unless you request that the data you have provided to the study is deleted.

Please note that if you opt out of having your records added to the national GP database, or of any other health database, via the NHS national data opt out then the NHS will not send us this information.

Information added from routine health records

We have asked your permission to add information held by NHS about you to the survey data. We also asked your partner (if you have one) for permission to add their records.

This includes information 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 have added information from your health records to your survey data. The data is now available via appropriate conditions of access to researchers via secure mechanisms such as the UK Data Service or similar organisations, including as part of the UK Longitudinal Linkage Collaboration (UK LLC). We have not yet added this information for your partner (if relevant).

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 GP records

You may have heard in the news about NHS England’s plans to create a national central database of GP records. If you have given us permission to access your health records held by NHS, we will be asking NHS England to send us your records from this new GP database so we can add them to your survey data. We will not send any of your survey responses to the NHS.

If you don’t want us to add your data from the GP database or any other NHS records to your survey data, you can contact us to withdraw your permission. You can call us for free on 0800 035 5761 or email us at ncds@ucl.ac.uk.

Please note that opting out of having your records added to the national GP database, or of any other health database, via the NHS national data opt out, is separate to opting out of us adding your health records to your survey data. If you have previously given permission to add your health records to your survey data, then we will continue to do this. But if you don’t want this to happen, please let us know using the contact details above.

We would like to assure you that the data will never be used for commercial purposes and will only be used for research. The data will be made available via appropriate conditions of access to researchers via secure mechanisms such as the UK Data Service or similar organisations, such as UK LLC.

Information added from routine economic records

We have asked your permission to add information held by the Department for Work and Pensions (DWP) and HM Revenue and Customs (HMRC) to the survey information held about you. We also asked your partner for permission to add their records (if you have one). – Department for Work and Pensions (DWP) records include information such as benefit claims and periods on employment programmes, HM Revenue & Customs (HMRC) records include information such as 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 via the UK longitudinal Linkage Collaboration (UKLLC). We are not yet adding this information for your partner (if relevant), but we are intending to add information from their records in the near future too.

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.

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.

The information will be made available to researchers under restricted access arrangements via the UK Data Service (UKDS) or similar organisation, such as the UK Longitudinal Linkage Collaboration (UK LLC). Researchers based within University College London may be given access to the linked data via the highly secure UCL Data Safe Haven (DSH). Access to the data will only be granted in these secure research environments and after a successful application procedure. Applications are assessed and approved by the CLS Data Access Committee team (and other bodies where appropriate). 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.

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 (with data securely hosted by Swansea University). 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.

Researchers based within University College London (UCL), where the study is run from, may be given access to the data via the highly secure UCL Data Safe Haven (DSH).

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.

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 brings together de-identified data from many of these studies including the four studies we run at CLS, together with linked administrative data, into a single database available to approved researchers for approved research projects. Combining the data from these studies together makes the data even more valuable, creating a resource which will significantly increase the potential for research. UK LLC was initially created as a research resource to support researchers doing priority research to help understand the impacts of the COVID-19 pandemic and develop new treatments. UK LLC has now received further funding from the Economic and Social Research Council and the Medical Research Council, to make linked study data available for any ethically approved research which is in the public benefit – not just research into COVID-19.

If you have given permission for your health records to be linked, then UK LLC has now linked your study data with NHS health data. Plans are also underway to link study data with employment, tax and benefits records for those of you who provided permission.

In order to securely link your administrative data to your survey responses, your personal details are provided to the UK LLC’s Trusted Third Parties – Digital Health and Care Wales (DHCW) and the Office for National Statistics (ONS). DHCW and ONS are not provided with the answers to your surveys.

For more details see About adding other information and refer to the UK LLC privacy policy.

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.

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.

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.

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.

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.

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 health visit, we will ask for a blood sample and for your permission to extract DNA from this to store for future use.

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.

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.

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.