Centre for Longitudinal Studies- National Child Development Study 1958 (NCDS)

Text removed is struck through; text added is underlined. Unchanged paragraphs are summarised rather than repeated.

Objective for processing

[9 paragraphs unchanged] Identifiable Civil Registration Mortality and Demographics are requested required in support of the following aims: [4 paragraphs unchanged] The CLS has previously received data for the purposes of updating the study’s database to prevent contact with those who have died or emigrated only. The CLS now requests to use this data for research purposes, and to sublicence this data via the UKDS. The data will be minimised as follows: The requested data will be minimised as follows: [21 paragraphs unchanged] Current proposed projects intend to: - Document and monitor socio-economic, demographic and other inequalities in cause-specific mortality over time - Understand the joint progress of morbidity and mortality and to what extend healthy life expectancy keeps pace. - Investigate the links between mental health and cause specific mortality - Investigate the links between early life circumstances, childhood characteristics and cause specific mortality. [31 paragraphs unchanged] vii. UKDS makes the data available to the researcher via theUKDS the UKDS SecureLab account via Multi Factor Authentication. , [4 paragraphs unchanged]

Processing activities

[31 paragraphs unchanged] The identifiable data received under this agreement will be used to validate [21 words unchanged] member has passed away or emigrated). These identifiable data will not be linked to any other data, and it will not be made available to researchers. UCL may transfer copies of variables received from NHS England to Digital Health and Care Wales (DHCW) to process on behalf of UCL for the purposes of obtaining linked data from NHS England which will be available to UCL and other authorised parties through the UK Longitudinal Linkage Collaboration (UK LLC). The specific variables which UCL may share with DHCW are: - NHS Number - Date of birth - Gender - Postcode As controller, UCL must ensure there are documented instructions setting out the specific details of the processing that DHCW will undertake its behalf. This must include arrangements for permanent deletion of the data and confirmation of such at the appropriate times. [6 paragraphs unchanged] Access to the UCL DHS is via remote access. For remote access: - Remote access will only be from secure locations situated within the territory of use (as further restricted elsewhere within the DSA if so done) stated within this DSA; - Access controls granting users the minimum level of access required are in place; - Remote access is only via secure connections (e.g., VPNs or secure protocols) to protect data; - Multifactor authentication (MFA) is required for remote access; - Device security, including up-to-date software and operating systems, antivirus software, and enabled firewalls are utilised for the remote access; - All remote access is undertaken within the scope of the organisation’s DSPT (or other security arrangements as per this DSA) and complies with the organisation’s remote access policy. Remote processing will be from secure locations within the UK. The data will not leave the UK at any time. [16 paragraphs unchanged] The Data will be accessed via remote access. For remote access: - Remote access will only be from secure locations situated within the territory of use (as further restricted elsewhere within the DSA if so done) stated within this DSA; - Access controls granting users the minimum level of access required are in place; - Remote access is only via secure connections (e.g., VPNs or secure protocols) to protect data; - Multifactor authentication (MFA) is required for remote access; - Device security, including up-to-date software and operating systems, antivirus software, and enabled firewalls are utilised for the remote access; - All remote access is undertaken within the scope of the organisation’s DSPT (or other security arrangements as per this DSA) and complies with the organisation’s remote access policy. Remote processing will be from secure locations within the UK. The data will not leave the UK at any time. [12 paragraphs unchanged]

Changed only in punctuation, spacing or capitalisation: Expected output.

Unchanged: Expected measurable benefits, Benefits reported.

Text removed is struck through; text added is underlined. Unchanged paragraphs are summarised rather than repeated.

Datasets: + Civil Registrations of Death; + Demographics · − MRIS - Personal Demographics Service; − MRIS - Scottish NHS / Registration

Objective for processing

British Cohort Study 1970 (BCS70) is a national longitudinal study which provides the medical and social science community with a set of data comprising information about the lives of its cohort members and their parents. This data set can be used to investigate factors which influence physical, psychological, educational and social development and outcomes. The Centre for Longitudinal Studies (CLS) at University College London (UCL) requires access to NHS England data to support the following research programme: Since 1970, there have been three subsequent attempts to gather information from the full cohort. With each successive attempt, the scope of enquiry has broadened from a strictly medical focus at birth, to encompass physical and educational development at the ages of ten and sixteen. ‘The National Child Development Study (NCDS) 1958’ Aims and Investigations The following provides context and history about the NCDS 1958: 1) To monitor child development educational, physical and psychological in the 1970s, in comparison with those made by the two previous surveys during the 1950s and 1960s. There is a desirability of further study of early hospitalisation, e.g. maternal employment, immunisation and vaccination, housing conditions. In 1958 doctors and scientists were concerned at the high rate of infant death and ill health in Britain. There were an alarming number of stillbirths and children dying in the first few weeks of life. In response to these trends, The National Child Development Study (NCDS) began as the Perinatal Mortality Survey. At the time nearly 17,500 babies, all of whom were born during 1 week in 1958, were studied. Information was collected on the family background of the mother, the pregnancy and labour, along with details of the baby at birth and during the first week of the baby’s life. 2) To analyse via in-depth studies, with comparison of special groups from the 1958 Study, involving 'deprived' children or children in anomalous family situations e.g. children in care, illegitimate, fostered, from one-parent families, or socially disadvantaged. Seven years later in 1965, it was decided it would be worthwhile to find families included in the original birth survey and see what had happened to the babies since they were born. There have been eight other major surveys, attempting to trace all those born in the week of the original 1958 survey – in 1969, 1974, 1981, 1991, 1999/2000, 2004/5, 2008/9 and 2013. In addition, a major ‘bio-medical’ survey took place in 2002/3. 3) To examine associations between high-risk medical and social factors in the perinatal period and subsequent child development, e.g. smoking in pregnancy, X-rays etc. This type of analysis, as in any longitudinal investigation, involves gathering data on a large range of 'intermediate variables', both social and environmental, which might affect both the 'casual' factor and the outcome. The Age 62 survey commenced in January 2020 when it was paused due to the impact of the COVID-19 pandemic but re-commenced in late 2021. Data collection for this sweep was completed in April 2024. 4) To identify special groups in childhood who fail to use the services provided by DHSS and DES e.g. schooling, health centres, dental care, speech therapy, etc. and the availability of these services to children in different areas, e.g. urban/rural districts. Subsequent sweeps* of the study will likely take place every five years. 5) To analyse regional variations in many factors on which data are available. The needs of pre-school children, for example, may vary from one region to the next on account of differences in the degree of urbanisation, level and type of industrialisation, family incomes, educational and housing policies, etc. This type of information would be of great value in the administrative and policy-making areas of local government. *The term ‘sweep’ is used to refer to a round of data collection in the longitudinal study. NCDS has collected information about cohort members’ education and employment, economic circumstances, family life, physical and emotional health and well-being, social participation and attitudes directly from those who have participated. Identifiable Civil Registration Mortality and Demographics are requested in support of the following aims: • Update participant's details on the CLS database with a view to 1) preventing seeking contact with those who have died and potentially causing distress to friends and relatives, and 2) preventing study resources from being wasted trying to contact individuals who have since emigrated outside of the UK. • Understand the Mortality outcomes of the NCDS cohort and investigate how individual behaviours and social or economic determinations of health behaviours such as drug and alcohol use, sexual health, diet and exercise may have influenced outcomes. • Support further research within the CLS • Support further research outside the CLS via sub licencing arrangements The CLS has previously received data for the purposes of updating the study’s database to prevent contact with those who have died or emigrated only. The CLS now requests to use this data for research purposes, and to sublicence this data via the UKDS. The requested data will be minimised as follows: • Data is limited to the ~18,500** individuals included in the NCDS 1958 cohort. *This is larger than the original 1958 cohort because over time the cohort was augmented by those who emigrated to the UK during childhood Where data is being shared within the CLS, or is being shared outside the CLS to support further research the data will be minimised on a project by project basis, this minimisation will be evaluated by the CLS Data Access Committee (DAC). The date of death will be de-identified as month and year, cause of death (ICD-10 codes) may be de-identified by truncation where needed. UCL is the data 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. CLS sought permission from the Confidentiality Advisory Group and obtained S251 approval to trace participants and to use their mortality data for research. The funding is provided by the Economic and Social Research Council. The University of Essex is a processor acting under the instructions of UCL. The University of Essex hosts the UKDS, their role is limited to storing the linked pseudonymised data and facilitating access to third-party researchers who have the necessary approvals and contractual measures in place required to access the data. Only substantive employees whose role supports the provision of the UKDS as a service are permitted to process the data. Should any researchers from the University of Essex wish to use the data deposited within the UKDS for research purposes they will be required to apply for access as per the process described in the ‘Sublicensing’ section below. Amazon Web Services (AWS) is a processor acting under the instructions of UCL. AWS’ role is limited to secure backup of data stored in UCL’s Data Safe Haven. UCL uses offsite data centre services provided by VIRTUS data centre. VIRTUS does not have access to the data. ****Sharing Data Within the CLS**** CLS researchers may request access to the pseudonymised mortality dataset disseminated under this Agreement for research purposes. CLS researchers requesting access to the data must submit a CLS Data Access Application Form. The form requires that they provide general information about the project including its title, aims and data required. Applicants are required to demonstrate how the project provides a measurable benefit in the provision of health and social care in England. Should the request be approved the following restrictions apply: Access will be restricted to CLS researchers who meet the following requirements: i. The researcher must be substantively employed in the CLS by UCL; ii. The researcher must be registered with the UKDS; iii. The researcher must have completed NHS England’s Data Security Awareness course; iv. The researcher must have submitted a project proposal for review by the CLS Data Access Committee (DAC) and the CLS DAC must have approved the access request; v. Once, approved, the researcher will sign a licence agreement with CLS and will then be granted access to the relevant subset of data via the UCL Data Safe Haven (DSH Current proposed projects intend to: - Document and monitor socio-economic, demographic and other inequalities in cause-specific mortality over time - Understand the joint progress of morbidity and mortality and to what extend healthy life expectancy keeps pace. - Investigate the links between mental health and cause specific mortality - Investigate the links between early life circumstances, childhood characteristics and cause specific mortality. ****Sharing Data via the UKDS – Sublicensing **** Non-CLS researchers may request access to a pseudonymised subset of the mortality data disseminated under this Agreement for research purposes. All access is via the UK Data Service (UKDS). The process of accessing data, and the licence type under which data is accessed varies depending on the disclosivity of the data, the sensitivity of the data and the potential consequences of the misuse of data. Research data have been classified into ‘Tiers’ depending on how disclosive, sensitive and risky individual data items are. Full details of how the CLS classify data can be found in the ‘CLS Data Classification Policy’ https://cls.ucl.ac.uk/wp-content/uploads/2017/02/CLS_Data_Classification_Policy-1.pdf ** UKDS Special safeguarded data (Tier 1b)** Special safeguarded data (Tier 1b) have a medium level of potential disclosure risk and/or sensitivity. Examples of mortality fields that fall within tier 1b include the fact of death and the month and year of death (mm/yyyy). Tier 1b data is accessed via a UKDS Special Licence. A UKDS Special Licence may be granted to successful applicants based within the UK. The process for access to Tier 1b data is as follows: 1. The researcher registers with the UKDS and signs the UKDS End User Licence Agreement. 2. Applicant submits and signs the UKDS Special Licence application form. 3. By signing the Special Licence application form the researcher agrees with the terms in the UKDS Research Data Handling and Security Guide for Users (https://ukdataservice.ac.uk/app/uploads/cd171-researchdatahandling.pdf) 4. The UKDS Data Access team screens the application to ensure it is properly completed. 5. The UKDS Data Access team sends the application form to CLS for approval by the Data Access Committee (CLS DAC). The CLS DAC have delegated to the CLS Research Data Management (RDM)* team the capability to evaluate and approve Special Licence data access requests. However, the RDM will seek advice and guidance from the Committee where novel issues arise. 6. A member of the CLS RDM team will assess the application on behalf of the CLS DAC and decide to approve it or request further information. The assessment is done against the CLS DAC assessment criteria set out in the CLS DAC Terms of Reference (https://cls.ucl.ac.uk/wp-content/uploads/2023/03/CLS_DAC_Terms_of_Reference.pdf). Should an application be rejected, a researcher can apply again with a revised application. 7. The CLS RDM team will inform UKDS that the project has been approved. 8. Special Licence-approved applications are reported at the next CLS DAC. 9. UKDS will inform the researcher that their project was approved and make the data available to them. 10. The researcher downloads the Special Licence data into their institutional server. Researchers must abide by the conditions laid out in the UKDS ‘Research Data Handling and Security Guide for Users’, which includes details of the individual and institutional penalties that are enforceable in the event of a breach of the conditions. They can only merge these data with CLS highly de-identified non-disclosive research data, which are also subject to UKDS Data Sharing Agreement terms and conditions. *RDM follow the DAC Terms of Reference i.e. they are reviewing against the same criteria **UKDS Controlled data (Tier 2)** Controlled data (Tier 2) have a high level of potential disclosure risk (for example exact dates, detailed geographical indicators) and/or high sensitivity. Examples of mortality fields that fall within tier 2 include date of death (dd/mm/yyyy) and cause of death including clinical codes for the cause of death. Tier 2 data is accessed via the UKDS SecureLab, which is the UKDS’ Trusted Research Environment (TRE). The UKDS SecureLab supports UK-based research projects only. The process for access to Tier 2 data is as follows: i. The researcher submits an application, including the UKDS 'Accredited Researcher application form', the 'Research proposal' and the “UCL Licence Agreement” to the UKDS. ii. The UKDS Data Access team screens the application to ensure it is properly completed. Once it is, they forward the application to the CLS. iii. The CLS Research Data Management (RDM) managers check the Organisational Information Governance and security assurance evidence provided in the “UCL Licence Agreement” and either requests further evidence to support the request or submits the application for CLS DAC approval. iv. The CLS DAC assesses both project documents (UKDS project proposal and the “UCL Licence Agreement”) and decides whether to approve it, not approve it, or they require further information. CLS DAC considerations include an assessment of the expected benefits to health care, adult social care or the promotion of health. Should an application be rejected, a researcher can apply again with a revised application. v. If the CLS DAC approves the project: a. CLS RDM team informs UKDS that the project has been approved. b. The CLS authorised representative signs the “UCL License agreement” and sends it back to the UKDS to be forwarded to the researcher. vi. UKDS informs the researcher that their project was approved; sends them a countersigned copy of the “UCL Licence Agreement” vii. UKDS makes the data available to the researcher via theUKDS SecureLab account via Multi Factor Authentication. , viii. The data will be provided to the researcher via their own UKDS SecureLab project folder, which will contain only the data that the researcher needs to see for their project. The research-linked data provided to researchers are pseudonymised and de-identified, and will never contain identifiable information such as name, address, date of birth, NHS or NI number. ix. The researcher accessing the data via the UKDS SecureLab will not be able to download any data into their own institutional server. Once the researcher has finished their research, the UKDS will delete the data folder with the tailored dataset for the specific project. x. Strict disclosure control checks are carried out by the UKDS before any research outputs, e.g. publication, can be extracted from the UKDS SecureLab account. xi. CLS DAC will publish the information about any data dissemination on the CLS website, including the name of the organisation to which data was provided, purpose (summary of the project) and what data was released. (NB: If CLS DAC does not approve the project, no data will be disseminated). https://cls.ucl.ac.uk/data-access-training/data-access/

Processing activities

Not stated in the previous version; added here.

** Data linkage **

The CLS will supply NHS England with a file of around 18146 study members to match to NHS data.

The file supplied will contain all cohort members who have ever participated in the study (excluding those who have requested the study to stop using their data).

Participants can;

a) withdraw from a specific data collection sweep of the study (in which case they would still be invited to take part in future sweeps of the study)

b) permanently withdraw from the study (in which case they will not be invited to take part in any future sweeps of the study) or

c) permanently withdraw from the study AND request that the data can no longer be used.

The file will contain the following items:

-CLS ID

-First name

-Last name

-Middle name (where available)

-Sex

-Date of birth

-Postcode

-NHS number (where available)

Following data linkage, NHS England will supply the following details to CLS:

- CLS identifier

- NHS Number

- Forename of the deceased

- Latest middle name (where available),

-Surname of the deceased

- Date of birth

-Date of death

-Fact of death

-Cause of death

- Gender

- Town of birth

-Address

- Date of address registration or update

-Other variables as chosen in the Civil Registration and Demographic dataset.

The identifiable data received under this agreement will be used to validate the information of the cohort on CLS's cohort maintenance database (meaning names and addresses are used to ensure the correct cohort member has passed away or emigrated). These identifiable data will not be linked to any other data, and it will not be made available to researchers.

The pseudonymised mortality data will be linked to the pseudonymised survey data and therefore will be linked to the survey data for research by the CLS Research Data Management team.

Researchers applying to use the survey linked to mortality data may also apply to use the linked data in combination with other datasets including Hospital Episode Statistics (HES) held by the study under DARS-NIC-49297-Q7G1Q.

***Access by the study operational teams and the wider CLS***

All data being accessed by the study team and the wider CLS is stored on the UCL Data Safe Haven (DSH).

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

UCL uses offsite data centre services provided by VIRTUS data centre. VIRTUS does not have access to the data.

Access to the UCL DHS is via remote access. For remote access:

- Remote access will only be from secure locations situated within the territory of use (as further restricted elsewhere within the DSA if so done) stated within this DSA;

- Access controls granting users the minimum level of access required are in place;

- Remote access is only via secure connections (e.g., VPNs or secure protocols) to protect data;

- Multifactor authentication (MFA) is required for remote access;

- Device security, including up-to-date software and operating systems, antivirus software, and enabled firewalls are utilised for the remote access;

- All remote access is undertaken within the scope of the organisation’s DSPT (or other security arrangements as per this DSA) and complies with the organisation’s remote access policy.

Remote processing will be from secure locations within the UK. The data will not leave the UK at any time.

Access to data held on the UCL DSH is restricted to the direct study team, and other individuals employed by UCL in the CLS who have received approval from the CLS DAC to access the data.

***Access by Sublicensees***

Access to data via sublicence depends on the tier the data falls under.

** UKDS Special safeguarded data (Tier 1b)**

The data will be stored on servers at the UK Data Archive based at the University of Essex. The UK Data Archive will store the pseudonymised analysis file only.

Subject to approval by the CLS DAC and obtaining a UKDS Special Licence, researchers receive data and work on their institutional servers.

Access is restricted to researchers who have received authorisation from CLS DAC and have obtained a UKDS Special Licence for their specific project.

This data dissemination includes the following safeguards:

i. Data transfers are made securely e.g. encrypted.

ii. The data will be used for database update and statistical research purposes and will not involve any direct decision-making about the health or treatment of a participant

iii. Data are stored in secure environments certified to ISO 27001 and/or a ‘Standards Met’ DSP Toolkit. (this is true about the data we receive from you).

iv. Data are only accessed in pseudonymised form and treated for disclosure if necessary.

v. Data will not be shared outside of the UK at any time.

** UKDS Controlled data (Tier 2)** **

The data will be stored on servers at the UK Data Archive based at the University of Essex. The UK Data Archive will store the pseudonymised analysis file only.

Subject to approval by the CLS, the UKDS will make data available to researchers via the UKDS Secure Lab.

The Data will be accessed via remote access. For remote access:

- Remote access will only be from secure locations situated within the territory of use (as further restricted elsewhere within the DSA if so done) stated within this DSA;

- Access controls granting users the minimum level of access required are in place;

- Remote access is only via secure connections (e.g., VPNs or secure protocols) to protect data;

- Multifactor authentication (MFA) is required for remote access;

- Device security, including up-to-date software and operating systems, antivirus software, and enabled firewalls are utilised for the remote access;

- All remote access is undertaken within the scope of the organisation’s DSPT (or other security arrangements as per this DSA) and complies with the organisation’s remote access policy.

Remote processing will be from secure locations within the UK. The data will not leave the UK at any time.

Access is restricted to researchers who have received authorisation from CLS DAC for their specific project.

All personnel accessing the data have been appropriately trained in data protection and confidentiality.

This data dissemination includes the following safeguards:

i. Linkages are covered by the Section 251 support (use of mortality data for research projects)

ii. Identifying variables are held separately from the survey responses, including during the matching process.

iii. Data transfers are made securely e.g. encrypted.

iv. The data will only be used for database update and statistical research purposes and will not involve any direct decision-making about the health or treatment of a participant

v. Data are stored in secure environments certified to ISO 27001 and/or a ‘Standards Met’ DSP Toolkit.

vi. Data are only accessed in pseudonymised form and treated for disclosure if necessary.

vii. Data are accessed via the receiving organisation's secure environment.

viii. Disclosure control checks are carried out before any research publication.

Data will not be shared outside of the UK at any time

Expected output

Not stated in the previous version; added here.

The key output of the NCDS is a database to be utilised as a resource for health research.

Output of mortality data-Mortality itself is a core outcome in population research (demography, epidemiology, statistics). The representativeness of mortality observed in our samples is needed for accurate scientific research and related policy outputs when mortality data are used. Examples of research where mortality data will be used include understanding the recent stagnation of life expectancy in the UK, investigation of inequalities in total and cause specific mortality and how these evolve over time and the joint progress of health and total life expectancy

The outputs may be communicated to relevant recipients through the following dissemination channels:

• Submissions to peer-reviewed journals

• Presentations at ‘appropriate conferences’

• Social media

• Public reports

• Industry newsletters

• Posters displayed at appropriate conferences.

• Press/media engagement

• Public promotion of the research

• Participant newsletters

Unless otherwise specified the outputs will not contain NHS England Data and will only contain aggregated information with small numbers suppressed as appropriate in line with the relevant disclosure rules for the dataset(s) from which the information was derived.

Outputs will be produced on an on-going basis.

Expected measurable benefits

Not stated in the previous version; added here.

The findings of the NCDS, and subsequent analysis carried out by third parties vis sublicence arrangements, are expected to contribute to evidence-based decision-making for policy-makers, local decision-makers such as doctors, and patients to inform best practice to improve the care, treatment and experience of health care users relevant to the subject matter of the study.

The central aim of the Age 62 Survey is to enable new research that will inform key public health concerns. The NCDS cohort is now transitioning between midlife and early older age, a critical time when CLS hypothesise that biological ageing in key systems (e.g., cardiovascular, metabolic, immunity) start to accelerate, and a series of health conditions that have a profound influence on well-being first become clinically manifest. CLS plans to uncover life course and inter-generational factors which contribute to healthy ageing among this generation, and thus to inform the development of preventative health policies across the whole of life that will expand healthy life expectancy, and reduce the burden of ill health and disease at older ages. CLS conceptualises healthy ageing within a life course framework in which they investigate the lifetime socioeconomic, biological, and psychological determinants of health outcomes at age 62, and their contribution to transitions in health and functional outcomes measured objectively from midlife (44/45) to early older age (62).

CLS's approach comprises multiple dimensions of health- cardiovascular/metabolic, cognitive, and physical health-and also flexibly incorporates the nature of associations between lifetime determinants and subsequent ageing outcomes, for example allowing for exposures to operate during critical or sensitive periods, or cumulatively across life.

Crucially, this framework enables the examination of the interrelationships among these domains of healthy ageing, and the extent to which they have common or separate aetiologies-as is highlighted in the specific examples set out below. Such a framework also encompasses the mechanisms through which such exposures operate (mediation), as well as whether the adverse effects of exposures on midlife health risk can be modified by other socioeconomic, biological, or psychological factors. One particularly relevant example of effect modification within this framework is reversibility: whether the risk of unhealthy ageing due to exposures in earlier life stages can be reversed or ameliorated in later life, for example through changes to health-related behaviours, or other policy modifiable interventions. Although existing life course health research has largely focused on identifying the early life risk factors for subsequent health, understanding whether such effects can be reversed informs the development of lifetime preventative health policies, and provides valuable information about which stages in the life course remediation of key risks for unhealthy ageing are possible. Compared with alternative approaches - typically based on cross-sectional, or more short-term longitudinal data-which focus solely on adult prevention or remediation, this approach greatly expands the timeframe for intervention, and enables the relative costs and benefits of prevention measures at different life stages to be assessed.

The Age 62 Survey will enable CLS to capture change between age 44/5 and 60, an important period when detrimental changes to underlying markers of health typically occur, and inequalities are magnified. For example, age-related increases in blood pressure (BP) and changes to lipid concentrations have been shown to occur between age 40 to 60, a period when significant functional decline is also expected. Cognitive function has been shown to decline at least as early as 45 years, and this has predictive capacity for later mild cognitive impairment, dementia, and mortality risk. Such changes are also increasingly likely to become clinically manifest around this time, with as many as 85% of Britons having at least one clinical disorder at age 60-64. The Age 62 Survey will also provide valuable baseline data against which future ageing can be quantified. The data collected will be used widely by scientists worldwide to enable the testing of novel hypotheses, and while these cannot be exhaustively described here (indeed, many are as yet unknown), we highlight the distinct potential of this endeavour in four domains, namely cardiometabolic health, physical function, cognitive function, and biological ageing.

It is hoped that through publication of findings in appropriate media, the findings of this research will add to the body of evidence that is considered by the bodies, organisations and individual care practitioners charged with making policy decisions for or within the NHS or treatment decisions in relation to specific patients.

Benefits of receiving mortality data:

being able to define the target population and assess achieved sample representativeness. All CLS cohorts were sampled with rigorous probability sample procedures to be representative of their target population. However, in population based longitudinal surveys, the target population is dynamic as changes occur for example due to mortality or emigration. In order to be able to define the target population at each sweep and – crucially – for the longitudinal sample, CLS need to use fact of death for all/any analyses of our cohorts. Without information on whether Cohort Members have died, we will not be able to accurately define the target population of any analyses and assess achieved sample representativeness. Consequently, robust statistical inference will become challenging, and this will impact all analyses done in the cohorts. Receiving this data will help CLS with this challenge.

Benefits reported

Yielded Benefits is not a requirement for new applications. The CLS have already achieved demonstrable benefits using research and other data including adding outputs to the existing body of evidence that influences research and decision making. These demonstrable benefits have been listed in the above section and include the following: - adding to the existing body of evidence supporting various scientific publications; - research evidence used for government briefing papers; - attracting media coverage to the wider issues surrounding the research Having received notification of deaths under previous versions of this agreement, CLS was able to identify those who passed away before contacting the cohort member for any activity related to their participation in the study. This prevented CLS from contacting upset relatives of those who passed away.