National Child Development Study (NCDS)- Tracing

University College London (UCL) requires access to NHS England data for the purpose of the National Childhood Development Study (NCDS). The study follows all those born in one week in 1958 through the course of their lives, charting the effects of experiences in early life on outcomes and achievements later on.

Since 1958 information has been gathered from the NCDS cohort on nine occasions. Over time, the scope of the enquiry has broadened from a strictly medical focus at birth, to encompass physical and educational development at the age of seven, physical, educational and social development at the ages of eleven and sixteen, and then to include economic development and other wider factors at ages 23, 33, 42, 44, 46, 50 and 55. The most recent survey commenced in 2020 when participants were aged 62. However, it was paused due to the pandemic, but this is now underway once again with an estimated end date of June 2023.

UCL's Centre for Longitudinal Studies (CLS) loses touch with participants when they move home between surveys. CLS therefore requires the latest addresses for study members so that they can be contacted and invited to continue participating in the study. All of these individuals have made an informed decision to participate in the study over the years and have been made aware that the study is seeking to follow them throughout their lives. Failure to make contact is the most significant cause of non-participation in the study. Evidence from prior surveys confirms that when contact is re-established many participants are keen to re-engage with the study and continue to participate. The receipt of up-to-date addresses for study members helps CLS maintain contact with participants which is crucial to the ongoing success of the study.

Any study members choosing not to take part in the study are flagged on the secure confidential address database at the CLS with a code denoting whether their refusal is temporary (i.e. for a particular wave/survey) or permanent (i.e. they wish to have no further involvement in the study). CLS will not seek to trace those participants which are flagged as permanent refusals, those cases will be removed from the matching file sent to NHS England. If a participant has died, the database will be updated to reflect this and ensure no subsequent attempts to contact will be made.

Tracing via NHS England is just one of the steps that CLS take to maintain contact with participants. In addition, CLS sends an annual mailing to participants which includes a reply slip which participants are asked to return to either confirm the contact details held or to provide updates. CLS also provides participants with ‘change of address’ cards which they are asked to return if they move. CLS also collects contact details for ‘stable contacts’ who can be contacted in the event that contact is lost with the cohort member.

The following NHS England data will be accessed:

• Demographics data - necessary so UCL can maintain contact with as large a number of study members as possible. CLS require updated addresses for study members.

The level of data will be identifiable – necessary to validate the participant's details and cross-check against the CLS database.

The data will be minimised as follows.

• Limited to data for approximately 13,000 participants of the NCDS study

UCL is the controller as the organisation responsible for ensuring that the data will only be processed for the purpose described above.

The lawful basis for processing personal data under the UK GDPR is Article 6(1)(e) - processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller;

The lawful basis for processing special category data under UK GDPR is Article 9(2)(j) processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes. In addition, for ethical reasons and under the Common Law Duty of Confidentiality, UCL sought permission from cohort members to access and link their routine health records to their survey data, and to the onward sharing of this linked data in pseudonymised form (via a secure setting with appropriate safeguards).

In addition, for ethical reasons and under the Common Law Duty of Confidentiality, UCL sought permission from the Confidentiality Advisory Group to access this data without consent. CLS has also received Research Ethical Committee (REC) approval for tracing participants.

The funding is provided by the Economic and Social Research Council. The age 62 survey is also funded by the Medical Research Council (MRC), the Department for Work and Pensions (DWP) and the U.S National Institute of Health. Funding is in place till 31st May 2025 but is expected to continue beyond this.

National Centre for Social Research (NatCen) and Kantar Public are processors acting under the instruction of UCL. NatCen has been contracted to conduct the current Age 62 Survey. NatCen has in turn sub-contracted some of the data collection to Kantar Public. NatCen and Kantar are provided with study member contact details in order to invite participants to take part in the survey. This includes data which has been supplied by NHS England for updated contact information.

Amazon Web Services provides cloud hosting services to UCL and will store the data as contracted by UCL.

VIRTUS Data Centre provides offsite back-up services but does not process the data.

All those accessing the data supplied by NHS England are substantive employees of University College London or employees of subcontractor organisations (NatCen /Kantar) carrying out work on behalf of UCL.

In advance of each sweep of data collection pilot studies are conducted with members of the public of a similar age to study participants. The pilot studies test the feasibility and acceptability of all aspects of the forthcoming survey. Pilot participants are asked to provide feedback on their experience of taking part which is then used to help make decisions about protocols for the survey. In 2019, a series of in-depth interviews and focus groups were conducted with 40 NCDS participants which focused on experiences of prior participation and views on how participants would like to participate in the future. The findings from this research have been and will continue to be used to shape future decisions about the design of NCDS.

The addresses supplied by NHS England under this agreement will help to boost the sample size and to increase the data collection at future sweeps. The output will be the participation in the survey, for those participants who would not otherwise have participated in the data collection. As a result of the previous list clean, CLS received new contact details for 1,167 participants which have been used to send mailings and invite participants to take part in the current NCDS Age 62 Survey. Following the new list clean CLS will use newly obtained addresses to send future mailings and invitations to future surveys

The main outcome of the study is the next sweep, Age 62 currently underway and scheduled to complete in 2023. This will be a fully documented, anonymised research dataset which will be archived with the UK Data Service to provide a strategically important resource for UK Social Science, including researchers in health and social care. For clarity, the data stored on UK Data Service does not include the NHS England data this Agreement but responses from participants of the study.

With 9,790 study members interviewed at the last face-to-face interview in 2008 and 9,137 in the online and telephone survey in 2013, the NCDS is the largest of the UK’s adult national birth cohort studies. The sample is nationally representative. The study’s content spans the biomedical and social sciences, with high-quality prospective data on social, biological, physical, and psychological phenotypes at each sweep, including from survey instruments, objective measures and via economic and health record linkage consent. The study has benefitted from sustained scientific and infrastructural investment over many decades, including, in 2002/3, an MRC-funded first biomedical sweep when cohort members were age 44/5, one of the primary goals of which was to serve as a baseline for the future study of ageing, and on which the Age 62 Survey will now build.

The Age 62 Survey will be comprised of two major components:

1) A core interview which will cover the following topics:

Health, well-being and cognition: physical health, mental health, medical care, health behaviours (e.g. smoking, drinking, diet, exercise), cognitive function.

Finances and employment: work, income, wealth (savings and debts, pensions, & housing), retirement plans & education.

Family, relationships and identity: social networks, relationships with partners, parents, children, friends, neighbourhood, social capital, social and political participation, attitudes and values, and religion.

2) A detailed biomedical assessment including measures of anthropometry, physical functioning, cardiovascular risk factors and a full range of blood tests. The central aim of this biomedical assessment is to enable new research that will inform key public health concerns.

CLS will produce a range of research outputs based on the NCDS Age 62 Survey, which CLS actively disseminate to participants, policy and practice stakeholders, and the wider scientific community. CLS also promote the data resources themselves to researchers across the public, private and third sectors, in the UK and globally. CLS offers support and advice to external researchers using NCDS data and promotes a selection of their work via CLS’s communication channels. Data and research outputs from the NCDS Age 62 Survey will be disseminated through:

• Scientific journals and pre-prints

• CLS working paper series

• Free-to-attend training workshops and webinars to support researchers across all sectors and disciplines who are interested in using the data

• Free-to-attend in-person and online research seminars open to the public

• Co-hosted events or briefings for government, parliamentary or third-sector stakeholders

• Digital communications channels, including social media, university websites, podcasts and video

• Public reports, particularly when in collaboration with third-sector partners

• Direct bilateral engagement with government department partners

• Industry newsletters

• Briefing documents provided to government department partners, third-sector organisations and other policy and practice stakeholders

• Press/media engagement

• Participant newsletters

In the NCDS 55 Survey which was conducted in 2013, UCL CLS achieved a large number of interviews with participants who had been newly traced to an address supplied by NHS England. The addresses obtained in previous versions of this agreement were also very useful to invite study members (NCDS age 44) to take part and re-engage with the studies. Using addresses provided by the NHS England helped CLS get in touch with those cohort members who would otherwise not be able to take part in a new survey.

The NCDS data is now available for researchers to access via the UK Data Service, providing an important resource for UK Social Science, including researchers in health and social care. https://beta.ukdataservice.ac.uk/datacatalogue/studies/study?id=5560

This Data Sharing Agreement permits the retention of the data provided under previous iterations of this Agreement. No new data flows between NHS Digital and University College London (UCL) will take place under this Agreement. The following describes the purposes for which data was supplied under previous versions of this Agreement.

The National Child Development Study (NCDS) is the second of Britain’s world renowned national longitudinal birth cohort studies. It follows all those born in one week in 1958 through the course of their lives, charting the effects of experiences in early life on outcomes and achievements later on. The study has its origins in the Perinatal Mortality Survey. Sponsored by the National Birthday Trust Fund, this was designed to examine the social and obstetric factors associated with stillbirth and death in early infancy among the children born in Great Britain in that one week. Information was gathered from 17,415 babies.

Since 1958 information has been gathered from the NCDS cohort on nine occasions. Over time, the scope of enquiry has broadened from a strictly medical focus at birth, to encompass physical and educational development at the age of seven, physical, educational and social development at the ages of eleven and sixteen, and then to include economic development and other wider factors at ages 23, 33, 42, 44, 46, 50 and 55. The next NCDS survey will take place in 2020 when study members will be aged 62.

In 1958, when the birth survey was carried out, consent to participate in surveys was gained by respondents agreeing to be interviewed or respondents returning the completed questionnaire to the study team. Involvement in subsequent surveys adopted the same approach. Individuals could withdraw from the study at any time by simply expressing the wish to do so.

In all recent follow-ups the approach to collecting consent has been very similar. During fieldwork, study members were sent an advance letter advising them about the survey. The letter was accompanied by an information leaflet explaining what is involved. Study members had the opportunity to request further information, or to opt out of the survey at this point. They could also seek further information, or refuse further involvement when the interviewer attempted to make an appointment to visit; when the interviewer visited and at any point during the administration of any elements of the surveys.

Of the approximately 17415 individuals that have ever participated in the study there will always be a number of individuals for whom the Centre for Longitudinal Studies (CLS) at University College London will not have a confirmed addresses at the time of carrying out the next survey. For example, In the most recent tracing exercise conducted with NHS Digital - CLS sent just under 3,500 study members for matching. It is estimated that the number of study members which will be sent for matching in the next exercise will be lower than this.

The ongoing success of the study depends on maintaining contact with as large a number of study members as possible. Therefore, CLS are seeking permission to be supplied with updated addresses for these study members whose whereabouts are currently unknown. All of these individuals have made an informed decision to participate in the study over the years and have been made aware that the study is seeking to follow them throughout their lives.

Objective:

Each year CLS sends an annual birthday card postal mailing in March to all NCDS participants. CLS asks that participants complete a ‘reply slip’ which is returned to CLS which allows participants to provide CLS with any change in their details e.g. a new email address, phone number, etc. CLS also ask them to return the reply slip even if none of their details have changed i.e. seeking a positive confirmation that that is the address CLS hold for them.

As a result CLS, can maintain the cohorts' latest details on the NCDS database. In the event of the birthday card not reaching the participant it is returned to CLS as a ‘return to sender’. CLS will attempt to trace all these returns – but if CLS cannot locate the participants then they are flagged on the database as a ‘gone-away’. It is these cases that are being sent to NHS Digital for list cleaning as the NHS may potentially hold a more recent address and provide CLS with an opportunity to invite the cohort to re-join the study.

NHS Digital will supply new addresses for untraced study members who can be matched to the NHS Central Registry/Personal Demographics Service (PDS).

CLS require to trace lost study members between now and the Age 62 survey in 2020 which is currently in the planning stage. Any study members successfully traced via this route would be written to and asked to provide updated contact details. They will then subsequently be invited to participate in the NCDS Age 62 survey (unless they withdraw from the study).

All those the researchers would seek to trace have participated in at least one prior sweep of the study and none have ever informed CLS that they no longer wish to participate in the study. The researchers feel that a substantial number of these individuals would be willing to participate in the study if they could be contacted. Previous efforts to re-establish contact for other cohort studies have been very successful using this route. When the cohort are contacted they will be given the opportunity to withdraw.

Any study members choosing not to take part in the study are flagged on the secure confidential address database at the CLS with a code denoting whether their refusal is temporary (i.e. for a particular wave/survey) or permanent (i.e. they wish to have no further involvement in the study). Any previously deposited pseudonymised survey data for a study member and confidential data from the address database are retained unless the study member specifically asks CLS not to, in which cases this data is securely deleted. If the participant has died no contact will be made and the study will be updated to reflect this.

For the NCDS Age 62 survey, CLS have contracted an external supplier NatCen Social Research (the trading name of the National Centre for Social Research) to carry out the individual study members' interviews. NatCen have been commissioned to run interviews with study members for the Age 62 Survey. In addition they will conduct a number of pilot studies in the run-up to the launch of the main survey. NatCen have also contracted an additional Data Processor, Kantar Public, to assist with these tasks.

CLS will use Copyprint to distribute annual mailings to all participants. This exercise serves as an additional method of maintaining contact with as many participants between Age surveys.

All processors (mentioned in this application) will have access to participant demographic information and contact details in order to carry out these processes. This includes data which has been supplied by NHS Digital for updated contact information.

The GDPR legal bases for processing the data held under this Agreement are Article 6(1)(e) - (processing is necessary for the performance of a task in the public interest or in the exercise of official authority vested in the controller) and Article 9(2)(j)

(processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes).

NCDS is a multidisciplinary cohort study of all babies born in Great Britain in a single week in 1958. The initial birth survey was conducted by midwives in hospitals across Great Britain, comprising a remarkable 98.1% of the target population. Participants have subsequently been followed up at 7, 11, 16, 23, 33, 42, 44/5 (a dedicated biomedical sweep), 46, 50 and 55 years of age. The initial sample of 17,415 individuals was augmented during childhood by immigrants into Great Britain, with a resulting total sample of 18,558.

With 9,790 study members interviewed at the last face-to-face interview in 2008 and 9,137 in the online and telephone survey in 2013, the NCDS is the largest of the UK’s adult national birth cohort studies. The sample is nationally representative. The study’s content spans the biomedical and social sciences, with high quality prospective data on social, biological, physical, and psychological phenotypes at each sweep, including from survey instruments, objective measures and via economic and health record linkage consent. The study has benefitted from sustained scientific and infrastructural investment over many decades, including, in 2002/3, an MRC-funded first biomedical sweep when cohort members were age 44/5, one of the primary goals of which was to serve as a baseline for the future study of ageing, and on which the Age 62 Survey will now build.

The Age 62 Survey will be comprised of two major components:

1) A core interview which will cover the following topics:

Health, well-being and cognition: physical health, mental health, medical care, health behaviours (e.g. smoking, drinking, diet, exercise), cognitive function.

Finances and employment: work, income, wealth (savings and debts, pensions, & housing), retirement plans & education.

Family, relationships and identity: social networks, relationships with partners, parents, children, friends, neighbourhood, social capital, social and political participation, attitudes and values, and religion.

2) A detailed biomedical assessment including measures of anthropometry, physical functioning, cardiovascular risk factors and a full range of blood tests. The central aim of this biomedical assessment is to enable new research that will inform key public health concerns.

The data collected will be documented, aggregated in line with the HES Analysis Guide, and archived with the UK Data Service in early 2023 to provide a strategically important resource for UK Social Science, including researchers in health and social care.

Outputs of the list clean :

These addresses obtained from NHS Digital will be used to maintain contact with study members e.g. to send them a special birthday mailing for their birthday and then later to invite them to take part in the Age 62 survey. As a result of the previous list clean - CLS was able to update its database with new contact details for 1705 participants who will receive the birthday mailing in March 2019. They will subsequently be invited to participate in the Age 62 Survey, (unless they withdraw from the study).

Findings from NCDS have repeatedly impacted on policy. Amongst its earliest findings was the discovery that maternal smoking in pregnancy was associated with higher rates of spontaneous abortion, lower birthweight in viable offspring, and reduced cognitive function in childhood which were not, as was suspected, due to confounding by social circumstances. An important part of the study’s history took place in 2002/3—the first and only full adult biomedical at age 44/5. This data collection yielded new insights into the environmental determinants of an array of adult health outcomes, and made a major impact on the understanding of the genetic underpinning of disease through its pioneering role as one of two sets of national ‘healthy’ controls in the Wellcome Trust Case Control Consortium (WTCCC). This data collection has also had a major impact through analyses based on NCDS’s life course data, demonstrating, for example, the life course continuity of psychological distress and its role as a determinant of future social circumstances; the influence of obesity across life on glucose metabolism, diabetes, and raised BP; and the link between lower pre-adult cognitive function and CVD risk factors and widespread pain; and a growing understanding of the pernicious long term effects of early life adversities such as poor social circumstances, experiences of neglect, abuse, and bullying on later impaired pulmonary function, indicators of cumulative physiological damage, inflammation, obesity, and cortisol patterns. Findings on Vitamin D deficiency in midlife led to the initiation of supplementation trials. NCDS has a high scientific output to date, as evidenced by the large number of publications and citations across a wide range of disciplines. In total over 1600 research publications have been produced using NCDS data since 2008 - of which a very significant proportion are focused on aspects of health. Below are some examples of existing publications using NCDS data benefiting public health:

ABO-ZAID, G, SHARPE, R.A., FLEMING, L.E., DEPLEDGE, M and OSBORNE, N.J.. (2018) Association of Infant Eczema with Childhood and Adult Asthma: Analysis of Data from the 1958 Birth Cohort Study. International Journal of Environmental Research and Public Health, 15(7), 1415.

IMPACT: Research using NCDS Cohort Study data has contributed to better understanding the relationship between early life eczema and asthma later in life.

Detailed information about the study can be found here:

https://www.mdpi.com/1660-4601/15/7/1415

BANN, D, JOHNSON, W, LI, L, KUH, D and HARDY, R. (2018) Socioeconomic inequalities in childhood and adolescent body-mass index, weight, and height from 1953 to 2015: an analysis of four longitudinal, observational, British birth cohort studies. Lancet Public Health, 3(4), e194-e203.

IMPACT: Research using NCDS Cohort Study data has enabled a long-run investigation of socioeconomic inequalities in BMI, and to more recent data than previously available.

Detailed information about the study can be found here:

https://www.sciencedirect.com/science/article/pii/S2468266718300458?via%3Dihub

BEAUMONT, R.N, WARRINGTON, N.M, CAVADINO, A, TYRRELL, J, NODZENSKI, M, HORIKOSHI, M, GELLER, F, MYHRE, R, RICHMOND, R.C, PATERNOSTER, L, BRADFIELD, J.P, KREINER-MØLLER, E, HUIKARI, V, METRUSTRY, S, LUNETTA, K.L, PAINTER, J.N, HOTTENGA, J-J, ALLARD, C, BARTON, S.J, ESPINOSA, A, MARSH, J.A, POTTER, C, ZHANG, G, ANG, W, BERRY, D.J, BOUCHARD, L, DAS, S, EARLY GROWTH GENETICS (EGG) CONSORTIUM, HAKONARSON, H, HEIKKINEN, J, HELGELAND, Ø, HOCHER, B, HOFMAN, A, INSKIP, H.M, JONES, S.E, KOGEVINAS, M, LIND, P.A, MARULLO, L, MEDLAND, S.E, MURRAY, A, MURRAY, J.C, NJØLSTAD, P.R, NOHR, E.A, REICHETZEDER, C, RING, S.M, RUTH, K.S, SANTA-MARINA, L, SCHOLTENS, D.M, SEBERT, S, SENGPIEL, V, TUKE, M.A, VAUDEL, M, WEEDON, M.N, WILLEMSEN, G, WOOD, A.R, YAGHOOTKAR, H, MUGLIA, L.J, BARTELS, M, RELTON, C.L, PENNELL, C.E, CHATZI, L, ESTIVILL, X, HOLLOWAY, J.W, BOOMSMA, D.I, MONTGOMERY, G.W, MURABITO, J.M, SPECTOR, T.D, POWER, C, JÄRVELIN, M-R, BISGAARD, H, GRANT, S.F, SØRENSEN, T.I, JADDOE, V.W, JACOBSSON, B, MELBYE, M, MCCARTHY, M.I, HATTERSLEY, A.T, HAYES, M.G, FRAYLING, T.M, HIVERT, M-F, FELIX, J.F, HYPPÖNEN, E, LOWE, W.L, EVANS, D.M, LAWLOR, D.A, FEENSTRA, B and FREATHY, R.M. (2018) Genome-wide association study of offspring birth weight in 86,577 women identifies five novel loci and highlights maternal genetic effects that are independent of fetal genetics. Human Molecular Genetics, 27(4), 742-756.

IMPACT: Research using NCDS Cohort Study data has contributed to better understanding of the role of maternal genetic variation on fetal birth weight.

Detailed information about the study can be found here:

https://academic.oup.com/hmg/article/27/4/742/4788598

• Power, C., & Matthews, S. (1997). Origins of health inequalities in a national population sample. The Lancet, 350(9091), 1584-1589.

• Hyppönen E, Power C. Hypovitaminosis D in British adults at age 45 y: nationwide cohort study of dietary and lifestyle predictors. Am J Clin Nutr. 2007; 85 (3):860-8.

• Strachan, D.P., 2000. Family size, infection and atopy: the first decade of the 'hygiene hypothesis'. Thorax, 55 (Suppl 1), p.S2.

• Clark C, Rodgers B, Caldwell T, Power C, Stansfeld S. Childhood and adulthood psychological ill health as predictors of midlife affective and anxiety disorders: the 1958 British Birth Cohort. Arch Gen Psychiatry. 2007; 64 (6):668-78.

• Orfei L, Strachan DP, Rudnicka AR, Wadsworth M. Early influences on adult lung function in two national British cohorts. Arch Dis Child. 2008; 93 (7):570-4.

• Johnson W, Li L, Kuh D, Hardy R. How Has the Age-Related Process of Overweight or Obesity Development Changed over Time? Co-ordinated Analyses of Individual Participant Data from Five United Kingdom Birth Cohorts. PLoS Med. 2015; 12 (5):e1001828.

The National Child Development Study (NCDS) is the second of Britain’s world renowned national longitudinal birth cohort studies. It follows all those born in one week in 1958 through the course of their lives, charting the effects of experiences in early life on outcomes and achievements later on. The study has its origins in the Perinatal Mortality Survey. Sponsored by the National Birthday Trust Fund, this was designed to examine the social and obstetric factors associated with stillbirth and death in early infancy among the children born in Great Britain in that one week. Information was gathered from 17,415 babies.

Since 1958 information has been gathered from the NCDS cohort on nine occasions. Over time, the scope of enquiry has broadened from a strictly medical focus at birth, to encompass physical and educational development at the age of seven, physical, educational and social development at the ages of eleven and sixteen, and then to include economic development and other wider factors at ages 23, 33, 42, 44, 46, 50 and 55. The next NCDS survey will take place in 2020 when study members will be aged 62.

In 1958, when the birth survey was carried out, consent to participate in surveys was gained by respondents agreeing to be interviewed or respondents returning the completed questionnaire to the study team. Involvement in subsequent surveys adopted the same approach. Individuals could withdraw from the study at any time by simply expressing the wish to do so.

In all recent follow-ups the approach to collecting consent has been very similar. During fieldwork, study members were sent an advance letter advising them about the survey. The letter was accompanied by an information leaflet explaining what is involved. Study members had the opportunity to request further information, or to opt out of the survey at this point. They could also seek further information, or refuse further involvement when the interviewer attempted to make an appointment to visit; when the interviewer visited and at any point during the administration of any elements of the surveys.

Of the approximately 17415 individuals that have ever participated in the study there will always be a number of individuals for whom the Centre for Longitudinal Studies (CLS) at University College London will not have a confirmed addresses at the time of carrying out the next survey. For example, In the most recent tracing exercise conducted with NHS Digital - CLS sent just under 3,500 study members for matching. It is estimated that the number of study members which will be sent for matching in the next exercise will be lower than this.

The ongoing success of the study depends on maintaining contact with as large a number of study members as possible. Therefore, CLS are seeking permission to be supplied with updated addresses for these study members whose whereabouts are currently unknown. All of these individuals have made an informed decision to participate in the study over the years and have been made aware that the study is seeking to follow them throughout their lives.

Objective:

Each year CLS sends an annual birthday card postal mailing in March to all NCDS participants. CLS asks that participants complete a ‘reply slip’ which is returned to CLS which allows participants to provide CLS with any change in their details e.g. a new email address, phone number, etc. CLS also ask them to return the reply slip even if none of their details have changed i.e. seeking a positive confirmation that that is the address CLS hold for them.

As a result CLS, can maintain the cohorts' latest details on the NCDS database. In the event of the birthday card not reaching the participant it is returned to CLS as a ‘return to sender’. CLS will attempt to trace all these returns – but if CLS cannot locate the participants then they are flagged on the database as a ‘gone-away’. It is these cases that are being sent to NHS Digital for list cleaning as the NHS may potentially hold a more recent address and provide CLS with an opportunity to invite the cohort to re-join the study.

NHS Digital will supply new addresses for untraced study members who can be matched to the NHS Central Registry/Personal Demographics Service (PDS).

CLS require to trace lost study members between now and the Age 62 survey in 2020 which is currently in the planning stage. Any study members successfully traced via this route would be written to and asked to provide updated contact details. They will then subsequently be invited to participate in the NCDS Age 62 survey (unless they withdraw from the study).

All those the researchers would seek to trace have participated in at least one prior sweep of the study and none have ever informed CLS that they no longer wish to participate in the study. The researchers feel that a substantial number of these individuals would be willing to participate in the study if they could be contacted. Previous efforts to re-establish contact for other cohort studies have been very successful using this route. When the cohort are contacted they will be given the opportunity to withdraw.

Any study members choosing not to take part in the study are flagged on the secure confidential address database at the CLS with a code denoting whether their refusal is temporary (i.e. for a particular wave/survey) or permanent (i.e. they wish to have no further involvement in the study). Any previously deposited pseudonymised survey data for a study member and confidential data from the address database are retained unless the study member specifically asks CLS not to, in which cases this data is securely deleted. If the participant has died no contact will be made and the study will be updated to reflect this.

For the NCDS Age 62 survey, CLS have contracted an external supplier NatCen Social Research (the trading name of the National Centre for Social Research) to carry out the individual study members' interviews. NatCen have been commissioned to run interviews with study members for the Age 62 Survey. In addition they will conduct a number of pilot studies in the run-up to the launch of the main survey. NatCen have also contracted an additional Data Processor, Kantar Public, to assist with these tasks.

CLS will use Copyprint to distribute annual mailings to all participants. This exercise serves as an additional method of maintaining contact with as many participants between Age surveys.

All processors (mentioned in this application) will have access to participant demographic information and contact details in order to carry out these processes. This includes data which has been supplied by NHS Digital for updated contact information.

NCDS is a multidisciplinary cohort study of all babies born in Great Britain in a single week in 1958. The initial birth survey was conducted by midwives in hospitals across Great Britain, comprising a remarkable 98.1% of the target population. Participants have subsequently been followed up at 7, 11, 16, 23, 33, 42, 44/5 (a dedicated biomedical sweep), 46, 50 and 55 years of age. The initial sample of 17,415 individuals was augmented during childhood by immigrants into Great Britain, with a resulting total sample of 18,558.

With 9,790 study members interviewed at the last face-to-face interview in 2008 and 9,137 in the online and telephone survey in 2013, the NCDS is the largest of the UK’s adult national birth cohort studies. The sample is nationally representative. The study’s content spans the biomedical and social sciences, with high quality prospective data on social, biological, physical, and psychological phenotypes at each sweep, including from survey instruments, objective measures and via economic and health record linkage consent. The study has benefitted from sustained scientific and infrastructural investment over many decades, including, in 2002/3, an MRC-funded first biomedical sweep when cohort members were age 44/5, one of the primary goals of which was to serve as a baseline for the future study of ageing, and on which the Age 62 Survey will now build.

The Age 62 Survey will be comprised of two major components:

1) A core interview which will cover the following topics:

Health, well-being and cognition: physical health, mental health, medical care, health behaviours (e.g. smoking, drinking, diet, exercise), cognitive function.

Finances and employment: work, income, wealth (savings and debts, pensions, & housing), retirement plans & education.

Family, relationships and identity: social networks, relationships with partners, parents, children, friends, neighbourhood, social capital, social and political participation, attitudes and values, and religion.

2) A detailed biomedical assessment including measures of anthropometry, physical functioning, cardiovascular risk factors and a full range of blood tests. The central aim of this biomedical assessment is to enable new research that will inform key public health concerns.

The data collected will be documented, aggregated in line with the HES Analysis Guide, and archived with the UK Data Service in early 2023 to provide a strategically important resource for UK Social Science, including researchers in health and social care.

Outputs of the list clean :

These addresses obtained from NHS Digital will be used to maintain contact with study members e.g. to send them a special birthday mailing for their birthday and then later to invite them to take part in the Age 62 survey. As a result of the previous list clean - CLS was able to update its database with new contact details for 1705 participants who will receive the birthday mailing in March 2019. They will subsequently be invited to participate in the Age 62 Survey, (unless they withdraw from the study).

Findings from NCDS have repeatedly impacted on policy. Amongst its earliest findings was the discovery that maternal smoking in pregnancy was associated with higher rates of spontaneous abortion, lower birthweight in viable offspring, and reduced cognitive function in childhood which were not, as was suspected, due to confounding by social circumstances. An important part of the study’s history took place in 2002/3—the first and only full adult biomedical at age 44/5. This data collection yielded new insights into the environmental determinants of an array of adult health outcomes, and made a major impact on the understanding of the genetic underpinning of disease through its pioneering role as one of two sets of national ‘healthy’ controls in the Wellcome Trust Case Control Consortium (WTCCC). This data collection has also had a major impact through analyses based on NCDS’s life course data, demonstrating, for example, the life course continuity of psychological distress and its role as a determinant of future social circumstances; the influence of obesity across life on glucose metabolism, diabetes, and raised BP; and the link between lower pre-adult cognitive function and CVD risk factors and widespread pain; and a growing understanding of the pernicious long term effects of early life adversities such as poor social circumstances, experiences of neglect, abuse, and bullying on later impaired pulmonary function, indicators of cumulative physiological damage, inflammation, obesity, and cortisol patterns. Findings on Vitamin D deficiency in midlife led to the initiation of supplementation trials. NCDS has a high scientific output to date, as evidenced by the large number of publications and citations across a wide range of disciplines. In total over 1600 research publications have been produced using NCDS data since 2008 - of which a very significant proportion are focused on aspects of health. Below are some examples of existing publications using NCDS data benefiting public health:

ABO-ZAID, G, SHARPE, R.A., FLEMING, L.E., DEPLEDGE, M and OSBORNE, N.J.. (2018) Association of Infant Eczema with Childhood and Adult Asthma: Analysis of Data from the 1958 Birth Cohort Study. International Journal of Environmental Research and Public Health, 15(7), 1415.

IMPACT: Research using NCDS Cohort Study data has contributed to better understanding the relationship between early life eczema and asthma later in life.

Detailed information about the study can be found here:

https://www.mdpi.com/1660-4601/15/7/1415

BANN, D, JOHNSON, W, LI, L, KUH, D and HARDY, R. (2018) Socioeconomic inequalities in childhood and adolescent body-mass index, weight, and height from 1953 to 2015: an analysis of four longitudinal, observational, British birth cohort studies. Lancet Public Health, 3(4), e194-e203.

IMPACT: Research using NCDS Cohort Study data has enabled a long-run investigation of socioeconomic inequalities in BMI, and to more recent data than previously available.

Detailed information about the study can be found here:

https://www.sciencedirect.com/science/article/pii/S2468266718300458?via%3Dihub

BEAUMONT, R.N, WARRINGTON, N.M, CAVADINO, A, TYRRELL, J, NODZENSKI, M, HORIKOSHI, M, GELLER, F, MYHRE, R, RICHMOND, R.C, PATERNOSTER, L, BRADFIELD, J.P, KREINER-MØLLER, E, HUIKARI, V, METRUSTRY, S, LUNETTA, K.L, PAINTER, J.N, HOTTENGA, J-J, ALLARD, C, BARTON, S.J, ESPINOSA, A, MARSH, J.A, POTTER, C, ZHANG, G, ANG, W, BERRY, D.J, BOUCHARD, L, DAS, S, EARLY GROWTH GENETICS (EGG) CONSORTIUM, HAKONARSON, H, HEIKKINEN, J, HELGELAND, Ø, HOCHER, B, HOFMAN, A, INSKIP, H.M, JONES, S.E, KOGEVINAS, M, LIND, P.A, MARULLO, L, MEDLAND, S.E, MURRAY, A, MURRAY, J.C, NJØLSTAD, P.R, NOHR, E.A, REICHETZEDER, C, RING, S.M, RUTH, K.S, SANTA-MARINA, L, SCHOLTENS, D.M, SEBERT, S, SENGPIEL, V, TUKE, M.A, VAUDEL, M, WEEDON, M.N, WILLEMSEN, G, WOOD, A.R, YAGHOOTKAR, H, MUGLIA, L.J, BARTELS, M, RELTON, C.L, PENNELL, C.E, CHATZI, L, ESTIVILL, X, HOLLOWAY, J.W, BOOMSMA, D.I, MONTGOMERY, G.W, MURABITO, J.M, SPECTOR, T.D, POWER, C, JÄRVELIN, M-R, BISGAARD, H, GRANT, S.F, SØRENSEN, T.I, JADDOE, V.W, JACOBSSON, B, MELBYE, M, MCCARTHY, M.I, HATTERSLEY, A.T, HAYES, M.G, FRAYLING, T.M, HIVERT, M-F, FELIX, J.F, HYPPÖNEN, E, LOWE, W.L, EVANS, D.M, LAWLOR, D.A, FEENSTRA, B and FREATHY, R.M. (2018) Genome-wide association study of offspring birth weight in 86,577 women identifies five novel loci and highlights maternal genetic effects that are independent of fetal genetics. Human Molecular Genetics, 27(4), 742-756.

IMPACT: Research using NCDS Cohort Study data has contributed to better understanding of the role of maternal genetic variation on fetal birth weight.

Detailed information about the study can be found here:

https://academic.oup.com/hmg/article/27/4/742/4788598

• Power, C., & Matthews, S. (1997). Origins of health inequalities in a national population sample. The Lancet, 350(9091), 1584-1589.

• Hyppönen E, Power C. Hypovitaminosis D in British adults at age 45 y: nationwide cohort study of dietary and lifestyle predictors. Am J Clin Nutr. 2007; 85 (3):860-8.

• Strachan, D.P., 2000. Family size, infection and atopy: the first decade of the 'hygiene hypothesis'. Thorax, 55 (Suppl 1), p.S2.

• Clark C, Rodgers B, Caldwell T, Power C, Stansfeld S. Childhood and adulthood psychological ill health as predictors of midlife affective and anxiety disorders: the 1958 British Birth Cohort. Arch Gen Psychiatry. 2007; 64 (6):668-78.

• Orfei L, Strachan DP, Rudnicka AR, Wadsworth M. Early influences on adult lung function in two national British cohorts. Arch Dis Child. 2008; 93 (7):570-4.

• Johnson W, Li L, Kuh D, Hardy R. How Has the Age-Related Process of Overweight or Obesity Development Changed over Time? Co-ordinated Analyses of Individual Participant Data from Five United Kingdom Birth Cohorts. PLoS Med. 2015; 12 (5):e1001828.

The National Child Development Study (NCDS) is the second of Britain’s world renowned national longitudinal birth cohort studies. It follows all those born in one week in 1958 through the course of their lives, charting the effects of experiences in early life on outcomes and achievements later on. The study has its origins in the Perinatal Mortality Survey. Sponsored by the National Birthday Trust Fund, this was designed to examine the social and obstetric factors associated with stillbirth and death in early infancy among the children born in Great Britain in that one week. Information was gathered from 17,415 babies.

Since 1958 information has been gathered from the NCDS cohort on nine occasions. Over time, the scope of enquiry has broadened from a strictly medical focus at birth, to encompass physical and educational development at the age of seven, physical, educational and social development at the ages of eleven and sixteen, and then to include economic development and other wider factors at ages 23, 33, 42, 44, 46, 50 and 55. The next NCDS survey will take place in 2020 when study members will be aged 62.

In 1958, when the birth survey was carried out, consent to participate in surveys was gained by respondents agreeing to be interviewed or respondents returning the completed questionnaire to the study team. Involvement in subsequent surveys adopted the same approach. Individuals could withdraw from the study at any time by simply expressing the wish to do so.

In all recent follow-ups the approach to collecting consent has been very similar. During fieldwork, study members were sent an advance letter advising them about the survey. The letter was accompanied by an information leaflet explaining what is involved. Study members had the opportunity to request further information, or to opt out of the survey at this point. They could also seek further information, or refuse further involvement when the interviewer attempted to make an appointment to visit; when the interviewer visited and at any point during the administration of any elements of the surveys.

Of the approximately 17415 individuals that have ever participated in the study there will always be a number of individuals for whom the Centre for Longitudinal Studies (CLS) at University College London will not have a confirmed addresses at the time of carrying out the next survey. For example, In the most recent tracing exercise conducted with NHS Digital - CLS sent just under 3,500 study members for matching. It is estimated that the number of study members which will be sent for matching in the next exercise will be lower than this.

The ongoing success of the study depends on maintaining contact with as large a number of study members as possible. Therefore, CLS are seeking permission to be supplied with updated addresses for these study members whose whereabouts are currently unknown. All of these individuals have made an informed decision to participate in the study over the years and have been made aware that the study is seeking to follow them throughout their lives.

Objective:

Each year CLS sends an annual birthday card postal mailing in March to all NCDS participants. CLS asks that participants complete a ‘reply slip’ which is returned to CLS which allows participants to provide CLS with any change in their details e.g. a new email address, phone number, etc. CLS also ask them to return the reply slip even if none of their details have changed i.e. seeking a positive confirmation that that is the address CLS hold for them.

As a result CLS, can maintain the cohorts' latest details on the NCDS database. In the event of the birthday card not reaching the participant it is returned to CLS as a ‘return to sender’. CLS will attempt to trace all these returns – but if CLS cannot locate the participants then they are flagged on the database as a ‘gone-away’. It is these cases that are being sent to NHS Digital for list cleaning as the NHS may potentially hold a more recent address and provide CLS with an opportunity to invite the cohort to re-join the study.

NHS Digital will supply new addresses for untraced study members who can be matched to the NHS Central Registry/Personal Demographics Service (PDS).

CLS require to trace lost study members between now and the Age 62 survey in 2020 which is currently in the planning stage. Any study members successfully traced via this route would be written to and asked to provide updated contact details. They will then subsequently be invited to participate in the NCDS Age 62 survey (unless they withdraw from the study).

All those the researchers would seek to trace have participated in at least one prior sweep of the study and none have ever informed CLS that they no longer wish to participate in the study. The researchers feel that a substantial number of these individuals would be willing to participate in the study if they could be contacted. Previous efforts to re-establish contact for other cohort studies have been very successful using this route. When the cohort are contacted they will be given the opportunity to withdraw.

Any study members choosing not to take part in the study are flagged on the secure confidential address database at the CLS with a code denoting whether their refusal is temporary (i.e. for a particular wave/survey) or permanent (i.e. they wish to have no further involvement in the study). Any previously deposited pseudonymised survey data for a study member and confidential data from the address database are retained unless the study member specifically asks CLS not to, in which cases this data is securely deleted. If the participant has died no contact will be made and the study will be updated to reflect this.

For the NCDS Age 62 survey, CLS have contracted an external supplier NatCen Social Research (the trading name of the National Centre for Social Research) to carry out the individual study members' interviews. NatCen have been commissioned to run interviews with study members for the Age 62 Survey. In addition they will conduct a number of pilot studies in the run-up to the launch of the main survey. NatCen have also contracted an additional Data Processor, Kantar Public, to assist with these tasks.

CLS will use Copyprint to distribute annual mailings to all participants. This exercise serves as an additional method of maintaining contact with as many participants between Age surveys.

All processors (mentioned in this application) will have access to participant demographic information and contact details in order to carry out these processes. This includes data which has been supplied by NHS Digital for updated contact information.

NCDS is a multidisciplinary cohort study of all babies born in Great Britain in a single week in 1958. The initial birth survey was conducted by midwives in hospitals across Great Britain, comprising a remarkable 98.1% of the target population. Participants have subsequently been followed up at 7, 11, 16, 23, 33, 42, 44/5 (a dedicated biomedical sweep), 46, 50 and 55 years of age. The initial sample of 17,415 individuals was augmented during childhood by immigrants into Great Britain, with a resulting total sample of 18,558.

With 9,790 study members interviewed at the last face-to-face interview in 2008 and 9,137 in the online and telephone survey in 2013, the NCDS is the largest of the UK’s adult national birth cohort studies. The sample is nationally representative. The study’s content spans the biomedical and social sciences, with high quality prospective data on social, biological, physical, and psychological phenotypes at each sweep, including from survey instruments, objective measures and via economic and health record linkage consent. The study has benefitted from sustained scientific and infrastructural investment over many decades, including, in 2002/3, an MRC-funded first biomedical sweep when cohort members were age 44/5, one of the primary goals of which was to serve as a baseline for the future study of ageing, and on which the Age 62 Survey will now build.

The Age 62 Survey will be comprised of two major components:

1) A core interview which will cover the following topics:

Health, well-being and cognition: physical health, mental health, medical care, health behaviours (e.g. smoking, drinking, diet, exercise), cognitive function.

Finances and employment: work, income, wealth (savings and debts, pensions, & housing), retirement plans & education.

Family, relationships and identity: social networks, relationships with partners, parents, children, friends, neighbourhood, social capital, social and political participation, attitudes and values, and religion.

2) A detailed biomedical assessment including measures of anthropometry, physical functioning, cardiovascular risk factors and a full range of blood tests. The central aim of this biomedical assessment is to enable new research that will inform key public health concerns.

The data collected will be documented, aggregated in line with the HES Analysis Guide, and archived with the UK Data Service in early 2023 to provide a strategically important resource for UK Social Science, including researchers in health and social care.

Outputs of the list clean :

These addresses obtained from NHS Digital will be used to maintain contact with study members e.g. to send them a special birthday mailing for their birthday and then later to invite them to take part in the Age 62 survey. As a result of the previous list clean - CLS was able to update its database with new contact details for 1705 participants who will receive the birthday mailing in March 2019. They will subsequently be invited to participate in the Age 62 Survey, (unless they withdraw from the study).

Findings from NCDS have repeatedly impacted on policy. Amongst its earliest findings was the discovery that maternal smoking in pregnancy was associated with higher rates of spontaneous abortion, lower birthweight in viable offspring, and reduced cognitive function in childhood which were not, as was suspected, due to confounding by social circumstances. An important part of the study’s history took place in 2002/3—the first and only full adult biomedical at age 44/5. This data collection yielded new insights into the environmental determinants of an array of adult health outcomes, and made a major impact on the understanding of the genetic underpinning of disease through its pioneering role as one of two sets of national ‘healthy’ controls in the Wellcome Trust Case Control Consortium (WTCCC). This data collection has also had a major impact through analyses based on NCDS’s life course data, demonstrating, for example, the life course continuity of psychological distress and its role as a determinant of future social circumstances; the influence of obesity across life on glucose metabolism, diabetes, and raised BP; and the link between lower pre-adult cognitive function and CVD risk factors and widespread pain; and a growing understanding of the pernicious long term effects of early life adversities such as poor social circumstances, experiences of neglect, abuse, and bullying on later impaired pulmonary function, indicators of cumulative physiological damage, inflammation, obesity, and cortisol patterns. Findings on Vitamin D deficiency in midlife led to the initiation of supplementation trials. NCDS has a high scientific output to date, as evidenced by the large number of publications and citations across a wide range of disciplines. In total over 1600 research publications have been produced using NCDS data since 2008 - of which a very significant proportion are focused on aspects of health. Below are some examples of existing publications using NCDS data benefiting public health:

ABO-ZAID, G, SHARPE, R.A., FLEMING, L.E., DEPLEDGE, M and OSBORNE, N.J.. (2018) Association of Infant Eczema with Childhood and Adult Asthma: Analysis of Data from the 1958 Birth Cohort Study. International Journal of Environmental Research and Public Health, 15(7), 1415.

IMPACT: Research using NCDS Cohort Study data has contributed to better understanding the relationship between early life eczema and asthma later in life.

Detailed information about the study can be found here:

https://www.mdpi.com/1660-4601/15/7/1415

BANN, D, JOHNSON, W, LI, L, KUH, D and HARDY, R. (2018) Socioeconomic inequalities in childhood and adolescent body-mass index, weight, and height from 1953 to 2015: an analysis of four longitudinal, observational, British birth cohort studies. Lancet Public Health, 3(4), e194-e203.

IMPACT: Research using NCDS Cohort Study data has enabled a long-run investigation of socioeconomic inequalities in BMI, and to more recent data than previously available.

Detailed information about the study can be found here:

https://www.sciencedirect.com/science/article/pii/S2468266718300458?via%3Dihub

BEAUMONT, R.N, WARRINGTON, N.M, CAVADINO, A, TYRRELL, J, NODZENSKI, M, HORIKOSHI, M, GELLER, F, MYHRE, R, RICHMOND, R.C, PATERNOSTER, L, BRADFIELD, J.P, KREINER-MØLLER, E, HUIKARI, V, METRUSTRY, S, LUNETTA, K.L, PAINTER, J.N, HOTTENGA, J-J, ALLARD, C, BARTON, S.J, ESPINOSA, A, MARSH, J.A, POTTER, C, ZHANG, G, ANG, W, BERRY, D.J, BOUCHARD, L, DAS, S, EARLY GROWTH GENETICS (EGG) CONSORTIUM, HAKONARSON, H, HEIKKINEN, J, HELGELAND, Ø, HOCHER, B, HOFMAN, A, INSKIP, H.M, JONES, S.E, KOGEVINAS, M, LIND, P.A, MARULLO, L, MEDLAND, S.E, MURRAY, A, MURRAY, J.C, NJØLSTAD, P.R, NOHR, E.A, REICHETZEDER, C, RING, S.M, RUTH, K.S, SANTA-MARINA, L, SCHOLTENS, D.M, SEBERT, S, SENGPIEL, V, TUKE, M.A, VAUDEL, M, WEEDON, M.N, WILLEMSEN, G, WOOD, A.R, YAGHOOTKAR, H, MUGLIA, L.J, BARTELS, M, RELTON, C.L, PENNELL, C.E, CHATZI, L, ESTIVILL, X, HOLLOWAY, J.W, BOOMSMA, D.I, MONTGOMERY, G.W, MURABITO, J.M, SPECTOR, T.D, POWER, C, JÄRVELIN, M-R, BISGAARD, H, GRANT, S.F, SØRENSEN, T.I, JADDOE, V.W, JACOBSSON, B, MELBYE, M, MCCARTHY, M.I, HATTERSLEY, A.T, HAYES, M.G, FRAYLING, T.M, HIVERT, M-F, FELIX, J.F, HYPPÖNEN, E, LOWE, W.L, EVANS, D.M, LAWLOR, D.A, FEENSTRA, B and FREATHY, R.M. (2018) Genome-wide association study of offspring birth weight in 86,577 women identifies five novel loci and highlights maternal genetic effects that are independent of fetal genetics. Human Molecular Genetics, 27(4), 742-756.

IMPACT: Research using NCDS Cohort Study data has contributed to better understanding of the role of maternal genetic variation on fetal birth weight.

Detailed information about the study can be found here:

https://academic.oup.com/hmg/article/27/4/742/4788598

• Power, C., & Matthews, S. (1997). Origins of health inequalities in a national population sample. The Lancet, 350(9091), 1584-1589.

• Hyppönen E, Power C. Hypovitaminosis D in British adults at age 45 y: nationwide cohort study of dietary and lifestyle predictors. Am J Clin Nutr. 2007; 85 (3):860-8.

• Strachan, D.P., 2000. Family size, infection and atopy: the first decade of the 'hygiene hypothesis'. Thorax, 55 (Suppl 1), p.S2.

• Clark C, Rodgers B, Caldwell T, Power C, Stansfeld S. Childhood and adulthood psychological ill health as predictors of midlife affective and anxiety disorders: the 1958 British Birth Cohort. Arch Gen Psychiatry. 2007; 64 (6):668-78.

• Orfei L, Strachan DP, Rudnicka AR, Wadsworth M. Early influences on adult lung function in two national British cohorts. Arch Dis Child. 2008; 93 (7):570-4.

• Johnson W, Li L, Kuh D, Hardy R. How Has the Age-Related Process of Overweight or Obesity Development Changed over Time? Co-ordinated Analyses of Individual Participant Data from Five United Kingdom Birth Cohorts. PLoS Med. 2015; 12 (5):e1001828.

The National Child Development Study (NCDS) is the second of Britain’s world renowned national longitudinal birth cohort studies. It follows all those born in one week in 1958 through the course of their lives, charting the effects of experiences in early life on outcomes and achievements later on. The study has its origins in the Perinatal Mortality Survey. Sponsored by the National Birthday Trust Fund, this was designed to examine the social and obstetric factors associated with stillbirth and death in early infancy among the children born in Great Britain in that one week. Information was gathered from 17,415 babies.

Since 1958 information has been gathered from the NCDS cohort on nine occasions. Over time, the scope of enquiry has broadened from a strictly medical focus at birth, to encompass physical and educational development at the age of seven, physical, educational and social development at the ages of eleven and sixteen, and then to include economic development and other wider factors at ages 23, 33, 42, 44, 46, 50 and 55. The next NCDS survey will take place in 2020 when study members will be aged 62.

In 1958, when the birth survey was carried out, consent to participate in surveys was gained by respondents agreeing to be interviewed or respondents returning the completed questionnaire to the study team. Involvement in subsequent surveys adopted the same approach. Individuals could withdraw from the study at any time by simply expressing the wish to do so.

In all recent follow-ups the approach to collecting consent has been very similar. During fieldwork, study members were sent an advance letter advising them about the survey. The letter was accompanied by an information leaflet explaining what is involved. Study members had the opportunity to request further information, or to opt out of the survey at this point. They could also seek further information, or refuse further involvement when the interviewer attempted to make an appointment to visit; when the interviewer visited and at any point during the administration of any elements of the surveys.

Of the approximately 17415 individuals that have ever participated in the study there will always be a number of individuals for whom the Centre for Longitudinal Studies (CLS) at University College London will not have a confirmed addresses at the time of carrying out the next survey. For example, In the most recent tracing exercise conducted with NHS Digital - CLS sent just under 3,500 study members for matching. It is estimated that the number of study members which will be sent for matching in the next exercise will be lower than this.

The ongoing success of the study depends on maintaining contact with as large a number of study members as possible. Therefore, CLS are seeking permission to be supplied with updated addresses for these study members whose whereabouts are currently unknown. All of these individuals have made an informed decision to participate in the study over the years and have been made aware that the study is seeking to follow them throughout their lives.

Objective:

Each year CLS sends an annual birthday card postal mailing in March to all NCDS participants. CLS asks that participants complete a ‘reply slip’ which is returned to CLS which allows participants to provide CLS with any change in their details e.g. a new email address, phone number, etc. CLS also ask them to return the reply slip even if none of their details have changed i.e. seeking a positive confirmation that that is the address CLS hold for them.

As a result CLS, can maintain the cohorts' latest details on the NCDS database. In the event of the birthday card not reaching the participant it is returned to CLS as a ‘return to sender’. CLS will attempt to trace all these returns – but if CLS cannot locate the participants then they are flagged on the database as a ‘gone-away’. It is these cases that are being sent to NHS Digital for list cleaning as the NHS may potentially hold a more recent address and provide CLS with an opportunity to invite the cohort to re-join the study.

NHS Digital will supply new addresses for untraced study members who can be matched to the NHS Central Registry/Personal Demographics Service (PDS).

CLS require to trace lost study members between now and the Age 62 survey in 2020 which is currently in the planning stage. Any study members successfully traced via this route would be written to and asked to provide updated contact details. They will then subsequently be invited to participate in the NCDS Age 62 survey (unless they withdraw from the study).

All those the researchers would seek to trace have participated in at least one prior sweep of the study and none have ever informed CLS that they no longer wish to participate in the study. The researchers feel that a substantial number of these individuals would be willing to participate in the study if they could be contacted. Previous efforts to re-establish contact for other cohort studies have been very successful using this route. When the cohort are contacted they will be given the opportunity to withdraw.

Any study members choosing not to take part in the study are flagged on the secure confidential address database at the CLS with a code denoting whether their refusal is temporary (i.e. for a particular wave/survey) or permanent (i.e. they wish to have no further involvement in the study). Any previously deposited pseudonymised survey data for a study member and confidential data from the address database are retained unless the study member specifically asks CLS not to, in which cases this data is securely deleted. If the participant has died no contact will be made and the study will be updated to reflect this.

For the NCDS Age 62 survey, CLS have contracted an external supplier NatCen Social Research (the trading name of the National Centre for Social Research) to carry out the individual study members' interviews. NatCen have been commissioned to run interviews with study members for the Age 62 Survey. In addition they will conduct a number of pilot studies in the run-up to the launch of the main survey. NatCen have also contracted an additional Data Processor, Kantar Public, to assist with these tasks.

CLS will use Copyprint to distribute annual mailings to all participants. This exercise serves as an additional method of maintaining contact with as many participants between Age surveys.

All processors (mentioned in this application) will have access to participant demographic information and contact details in order to carry out these processes. This includes data which has been supplied by NHS Digital for updated contact information.

NCDS is a multidisciplinary cohort study of all babies born in Great Britain in a single week in 1958. The initial birth survey was conducted by midwives in hospitals across Great Britain, comprising a remarkable 98.1% of the target population. Participants have subsequently been followed up at 7, 11, 16, 23, 33, 42, 44/5 (a dedicated biomedical sweep), 46, 50 and 55 years of age. The initial sample of 17,415 individuals was augmented during childhood by immigrants into Great Britain, with a resulting total sample of 18,558.

With 9,790 study members interviewed at the last face-to-face interview in 2008 and 9,137 in the online and telephone survey in 2013, the NCDS is the largest of the UK’s adult national birth cohort studies. The sample is nationally representative. The study’s content spans the biomedical and social sciences, with high quality prospective data on social, biological, physical, and psychological phenotypes at each sweep, including from survey instruments, objective measures and via economic and health record linkage consent. The study has benefitted from sustained scientific and infrastructural investment over many decades, including, in 2002/3, an MRC-funded first biomedical sweep when cohort members were age 44/5, one of the primary goals of which was to serve as a baseline for the future study of ageing, and on which the Age 62 Survey will now build.

The Age 62 Survey will be comprised of two major components:

1) A core interview which will cover the following topics:

Health, well-being and cognition: physical health, mental health, medical care, health behaviours (e.g. smoking, drinking, diet, exercise), cognitive function.

Finances and employment: work, income, wealth (savings and debts, pensions, & housing), retirement plans & education.

Family, relationships and identity: social networks, relationships with partners, parents, children, friends, neighbourhood, social capital, social and political participation, attitudes and values, and religion.

2) A detailed biomedical assessment including measures of anthropometry, physical functioning, cardiovascular risk factors and a full range of blood tests. The central aim of this biomedical assessment is to enable new research that will inform key public health concerns.

The data collected will be documented, aggregated in line with the HES Analysis Guide, and archived with the UK Data Service in early 2023 to provide a strategically important resource for UK Social Science, including researchers in health and social care.

Outputs of the list clean :

These addresses obtained from NHS Digital will be used to maintain contact with study members e.g. to send them a special birthday mailing for their birthday and then later to invite them to take part in the Age 62 survey. As a result of the previous list clean - CLS was able to update its database with new contact details for 1705 participants who will receive the birthday mailing in March 2019. They will subsequently be invited to participate in the Age 62 Survey, (unless they withdraw from the study).

Findings from NCDS have repeatedly impacted on policy. Amongst its earliest findings was the discovery that maternal smoking in pregnancy was associated with higher rates of spontaneous abortion, lower birthweight in viable offspring, and reduced cognitive function in childhood which were not, as was suspected, due to confounding by social circumstances. An important part of the study’s history took place in 2002/3—the first and only full adult biomedical at age 44/5. This data collection yielded new insights into the environmental determinants of an array of adult health outcomes, and made a major impact on the understanding of the genetic underpinning of disease through its pioneering role as one of two sets of national ‘healthy’ controls in the Wellcome Trust Case Control Consortium (WTCCC). This data collection has also had a major impact through analyses based on NCDS’s life course data, demonstrating, for example, the life course continuity of psychological distress and its role as a determinant of future social circumstances; the influence of obesity across life on glucose metabolism, diabetes, and raised BP; and the link between lower pre-adult cognitive function and CVD risk factors and widespread pain; and a growing understanding of the pernicious long term effects of early life adversities such as poor social circumstances, experiences of neglect, abuse, and bullying on later impaired pulmonary function, indicators of cumulative physiological damage, inflammation, obesity, and cortisol patterns. Findings on Vitamin D deficiency in midlife led to the initiation of supplementation trials. NCDS has a high scientific output to date, as evidenced by the large number of publications and citations across a wide range of disciplines. In total over 1600 research publications have been produced using NCDS data since 2008 - of which a very significant proportion are focused on aspects of health. Below are some examples of existing publications using NCDS data benefiting public health:

ABO-ZAID, G, SHARPE, R.A., FLEMING, L.E., DEPLEDGE, M and OSBORNE, N.J.. (2018) Association of Infant Eczema with Childhood and Adult Asthma: Analysis of Data from the 1958 Birth Cohort Study. International Journal of Environmental Research and Public Health, 15(7), 1415.

IMPACT: Research using NCDS Cohort Study data has contributed to better understanding the relationship between early life eczema and asthma later in life.

Detailed information about the study can be found here:

https://www.mdpi.com/1660-4601/15/7/1415

BANN, D, JOHNSON, W, LI, L, KUH, D and HARDY, R. (2018) Socioeconomic inequalities in childhood and adolescent body-mass index, weight, and height from 1953 to 2015: an analysis of four longitudinal, observational, British birth cohort studies. Lancet Public Health, 3(4), e194-e203.

IMPACT: Research using NCDS Cohort Study data has enabled a long-run investigation of socioeconomic inequalities in BMI, and to more recent data than previously available.

Detailed information about the study can be found here:

https://www.sciencedirect.com/science/article/pii/S2468266718300458?via%3Dihub

BEAUMONT, R.N, WARRINGTON, N.M, CAVADINO, A, TYRRELL, J, NODZENSKI, M, HORIKOSHI, M, GELLER, F, MYHRE, R, RICHMOND, R.C, PATERNOSTER, L, BRADFIELD, J.P, KREINER-MØLLER, E, HUIKARI, V, METRUSTRY, S, LUNETTA, K.L, PAINTER, J.N, HOTTENGA, J-J, ALLARD, C, BARTON, S.J, ESPINOSA, A, MARSH, J.A, POTTER, C, ZHANG, G, ANG, W, BERRY, D.J, BOUCHARD, L, DAS, S, EARLY GROWTH GENETICS (EGG) CONSORTIUM, HAKONARSON, H, HEIKKINEN, J, HELGELAND, Ø, HOCHER, B, HOFMAN, A, INSKIP, H.M, JONES, S.E, KOGEVINAS, M, LIND, P.A, MARULLO, L, MEDLAND, S.E, MURRAY, A, MURRAY, J.C, NJØLSTAD, P.R, NOHR, E.A, REICHETZEDER, C, RING, S.M, RUTH, K.S, SANTA-MARINA, L, SCHOLTENS, D.M, SEBERT, S, SENGPIEL, V, TUKE, M.A, VAUDEL, M, WEEDON, M.N, WILLEMSEN, G, WOOD, A.R, YAGHOOTKAR, H, MUGLIA, L.J, BARTELS, M, RELTON, C.L, PENNELL, C.E, CHATZI, L, ESTIVILL, X, HOLLOWAY, J.W, BOOMSMA, D.I, MONTGOMERY, G.W, MURABITO, J.M, SPECTOR, T.D, POWER, C, JÄRVELIN, M-R, BISGAARD, H, GRANT, S.F, SØRENSEN, T.I, JADDOE, V.W, JACOBSSON, B, MELBYE, M, MCCARTHY, M.I, HATTERSLEY, A.T, HAYES, M.G, FRAYLING, T.M, HIVERT, M-F, FELIX, J.F, HYPPÖNEN, E, LOWE, W.L, EVANS, D.M, LAWLOR, D.A, FEENSTRA, B and FREATHY, R.M. (2018) Genome-wide association study of offspring birth weight in 86,577 women identifies five novel loci and highlights maternal genetic effects that are independent of fetal genetics. Human Molecular Genetics, 27(4), 742-756.

IMPACT: Research using NCDS Cohort Study data has contributed to better understanding of the role of maternal genetic variation on fetal birth weight.

Detailed information about the study can be found here:

https://academic.oup.com/hmg/article/27/4/742/4788598

• Power, C., & Matthews, S. (1997). Origins of health inequalities in a national population sample. The Lancet, 350(9091), 1584-1589.

• Hyppönen E, Power C. Hypovitaminosis D in British adults at age 45 y: nationwide cohort study of dietary and lifestyle predictors. Am J Clin Nutr. 2007; 85 (3):860-8.

• Strachan, D.P., 2000. Family size, infection and atopy: the first decade of the 'hygiene hypothesis'. Thorax, 55 (Suppl 1), p.S2.

• Clark C, Rodgers B, Caldwell T, Power C, Stansfeld S. Childhood and adulthood psychological ill health as predictors of midlife affective and anxiety disorders: the 1958 British Birth Cohort. Arch Gen Psychiatry. 2007; 64 (6):668-78.

• Orfei L, Strachan DP, Rudnicka AR, Wadsworth M. Early influences on adult lung function in two national British cohorts. Arch Dis Child. 2008; 93 (7):570-4.

• Johnson W, Li L, Kuh D, Hardy R. How Has the Age-Related Process of Overweight or Obesity Development Changed over Time? Co-ordinated Analyses of Individual Participant Data from Five United Kingdom Birth Cohorts. PLoS Med. 2015; 12 (5):e1001828.