Centre for Longitudinal Studies - Millennium Cohort Study (MCS) - Child of the New Century -Mortality

The Centre for Longitudinal Studies (CLS) at University College London (UCL) requires access to NHS England data to support the following research programme:

Millennium Cohort Study (MCS) - Child of the New Century

MCS is following the lives of around 19000 young people born across England, Scotland, Wales and Northern Ireland in 2000-02.

MCS is renowned worldwide for the evidence it provides on children’s experience of growing up in the United Kingdom in the 21st Century. Since the study’s launch there have been seven attempts to re-contact and gather information from the whole cohort (at ages 9 months, 3 years, 5 years, 7 years, 11 years, 14 years and 17 years). The MCS covers diverse topics such as parenting; childcare; schooling and education (e.g academic qualifications, vocational qualifications); daily activities and behaviour; cognitive development; child and parent mental and physical health; employment and education; income and poverty; housing, neighbourhood, and residential mobility; and social capital, ethnicity and identity.

The information collected in previous sweeps of the study has formed the high-quality data resource, that is MCS, for scientific investigation across the life course and domains. The seventh, Age 17 survey (2018-19) added to the data already collected in previous sweeps by updating information on current circumstances of the cohort and experiences they have had since the last sweep. In previous sweeps, schooling will have been the main activity common to the vast majority of cohort members.

CLS have access to NHS England data for the purpose of updating participant contact details and mortality information held on CLS systems and for the purpose of contacting participants and maximise involvement in future sweeps conducted within this study.

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 MCS 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 ~19,000 individuals included in the MCS cohort.

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/

The scientific priorities and questionnaire content will be elaborated and developed in consultation with the academic and policy community with the aim of collecting both information relevant to their lives at age 22 and to later life outcomes, as well as repeat measures of topics covered at age 17. CLS will continue to prospectively harmonise the content with other comparable cohorts, particularly those in the UK, by drawing on comparable measures at a similar age. All surveys are overseen by the CLS Strategic Advisory Board (SAB) which contains representatives from UKRI, Wellcome Trust, Medical Research Council, the scientific community and government departments. The SAB provide high level strategic oversight for CLS to ensure the cohort studies led by the centre are developed, managed and maintained in a manner that maximises their benefit as long-term scientific resources of importance both nationally and internationally, while protecting participants’ interests The SAB ensure that the content is closely aligned with research priorities, as well as the areas of research interest (ARIs) published by government departments. CLS will reflect these priorities when deciding on the major themes which CLS intend to cover at the next sweep collection at age 22 provisionally planned to take place in 2021.

CLS will continue to produce outputs from the study via the UK Data Service in the form of aggregated report for the benefit of the wider research community as previous interest in MCS data has proven to be sought in a large scope of research areas. CLS will also publish papers in a range of journals; however it is not possible to provide detail at this point as to precisely which journals and dates, but the intention is to produce outputs along the same lines as those produced after the previous sweep.

This information has been used to prevent us from seeking to contact those who have died and thus potentially causing distress to family and friends. Information on exit/entries from NHS England have prevented us from using resources contacting individuals who are no longer in Great Britain. The demographic data has been used to update CLS ‘s database with new addresses which have been 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 future surveys.

MCS has provided important evidence to show how circumstances in the very first stages of life can influence later health and development.

Research based on MCS has shown that the likelihood of being breastfed is affected by which day in the week a child is born, which has strong subsequent effects on cognitive development.

The study has contributed crucial evidence on two major health issues facing this generation; the high rates of both mental-ill health and obesity among this age group, now in their teens.

Mental Health study

New research using information from MCS shows a quarter of girls (24%) and one in 10 boys (9%) are depressed at age 14. Researchers from the UCL Institute of Education and the University of Liverpool analysed information on more than 10,000 children born in 2000-01 who are taking part in the Millennium Cohort Study.

At ages 3, 5, 7, 11 and 14, parents reported on their children’s mental health. Then, when they reached 14, the children were themselves asked questions about their depressive symptoms. Based on the 14-year-olds reporting of their emotional problems, 24 per cent of girls and 9 per cent of boys suffer from depression.

The research, published with the National Children’s Bureau, also investigated links between depressive symptoms and family income. Generally, 14-year-olds from better-off families were less likely to have high levels of depressive symptoms compared to their peers from poorer homes. Parents’ reports of emotional problems were roughly the same for boys and girls throughout childhood, increasing from 7 per cent of children at age 7 to 12 per cent at age 11. However, by the time they reached early adolescence at age 14, emotional problems became more prevalent in girls, with 18 per cent having symptoms of depression and anxiety, compared to 12 per cent of boys. Behaviour problems, such as acting out, fighting and being rebellious decreased from infancy to age 5, but then increased to age 14. Boys were more likely than girls to have behaviour problems throughout childhood and early adolescence.

As 14-year-olds’ own reports of their emotional problems were different to their parents’, this research highlights the importance of considering young people’s views on their own mental health.

Obesity study

One in five young people born in the UK at the turn of the century was obese by the age of 14, and a further 15 per cent were found to be overweight. Researchers from the Centre for Longitudinal Studies (CLS) at the UCL Institute of Education analysed information on more than 10,000 teenagers who are taking part in the Millennium Cohort Study. These latest findings reinforce the importance of plans from UK governments to tackle the childhood obesity epidemic over the coming years. In response to public concern over childhood obesity, the most significant steps in recent government policy include the introduction of a levy on added sugar in soft drinks in April 2018, and a programme to reduce sugar across a range of products by 20 per cent by 2020, alongside reductions in salt and saturated fat. The report from CLS, which is published with a briefing paper on Thursday (7 December), reveals that although the same proportion of boys and girls were obese (20%), rates of overweight were slightly higher for girls (16%) than boys (13%). Rates of excess weight varied by country, with almost 40 per cent of young people in Northern Ireland overweight or obese, compared to 38 per cent in Wales, and 35 per cent in both Scotland and England. There was a clear link between young people’s weight and their mothers’ level of education. Almost 40 per cent of 14-year-olds whose mothers had only GCSE qualifications were overweight or obese, compared to 26 per cent of those whose mothers had a degree or higher qualifications. In addition, children who were breastfed as infants, and those whose parents owned their home, had lower odds of being overweight and obese at age 14.

The researchers also analysed information on children’s height and weight at ages 3, 5, 7, 11 and 14, to uncover patterns of weight gain across childhood. They found that rates of overweight and obesity increased slightly from ages 3 to 7, but rose significantly at age 11, from 25 per cent to 35 per cent, with this increase being especially strong among boys. By age 14, however, they discovered that rates of excess weight had stabilised. While boys were slightly less likely to have become overweight and obese than to have become a normal weight by age 14, for girls the opposite was the case.

Below are examples of existing publications using the Millennium Cohort Study data benefiting public health.

Smoking in pregnancy

Several studies based on MCS have looked at how smoking during pregnancy relates to children's development. One group of researchers found that babies with mothers who smoked at any point while they were pregnant weighed on average 146 grams less when they were born (around the weight of a smartphone) than babies with mums who did not smoke. Overall, the more cigarettes a mother smoked a day, the less her baby weighed at birth.

Babies with mothers whose partners smoked around them while they were pregnant also weighed on average 36 grams less (about the weight of a chocolate bar) than those with mothers who were not exposed to smoke.

Another research study has suggested that children are more likely to have behaviour problems at age 3 if their mothers smoke while they are pregnant.

Breastfeeding and child health

An influential study found that babies who were breastfed in the first months of their lives were less likely to go to hospital for diarrhoea or respiratory problems, such as infections and pneumonia. The researchers estimated that half of hospital stays for diarrhoea, and a quarter of stays for respiratory problems, could be prevented every month if all babies in the UK were fed entirely on breast milk for at least six months.

Breastfeeding and child development

Between ages 3 and 7 MCS children took part in a range of activities to show which words they knew and the patterns they could identify in shapes and images. Studies have found that children who were breastfed tended to do better in these exercises and to have less behaviour problems.

Research has also suggested that there is a relationship between breastfeeding and young children's ability to coordinate the movements of their arms and legs and to reach milestones such as standing up for the first time and taking their first steps.

The Centre for Longitudinal Studies (CLS) at University College London (UCL)requires access to NHS England data for the purpose of the Millennium Cohort Study (MCS) also known as the ‘Child of the New Century’.

MCS is following the lives of around 19000 young people born across England, Scotland, Wales and Northern Ireland in 2000-02.

MCS is renowned worldwide for the evidence it provides on children’s experience of growing up in the United Kingdom in the 21st Century. Since the study’s launch there have been seven attempts to re-contact and gather information from the whole cohort (at ages 9 months, 3 years, 5 years, 7 years, 11 years, 14 years and 17 years). The MCS covers diverse topics as parenting; childcare; schooling and education (e.g academic qualifications, vocational qualifications); daily activities and behaviour; cognitive development; child and parent mental and physical health; employment and education; income and poverty; housing, neighbourhood, and residential mobility; and social capital, ethnicity and identity.

The information collected in previous sweeps of the study has formed the high-quality data resource, that is MCS, for scientific investigation across the life course and domains. The seventh, Age 17 survey (2018-19) added to the data already collected in previous sweeps by updating information on current circumstances of the cohort and experiences they have had since the last sweep. In previous sweeps, schooling will have been the main activity common to the vast majority of cohort members.

CLS have access to NHS England data for the purpose of updating participant contact details and mortality information held on CLS systems and for the purpose of contacting participants and maximise involvement in future sweeps conducted within this study.

CLS have previously received record level, identifiable data linked to the cohort from the following datasets.

- MRIS – Cause of Death Report

- MRIS - List Cleaning Report

- MRIS - Members and Postings Report

- MRIS – Cohort Event Notification Report

- MRIS – Flagging Current Status Report

-

MRIS reports were disbanded in 2020 and CLS received the replacement data sets;

-Demographics (CLS now receive Demographics data via DARS-NIC-408892-F1R1Y)

-Civil Registrations of Deaths

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).

The Economic and Social Research Council (ESRC) are the funder for this study. The funder will have no ability to suppress or otherwise limit the publication of findings.

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.

The scientific priorities and questionnaire content will be elaborated and developed in consultation with the academic and policy community with the aim of collecting both information relevant to their lives at age 22 and to later life outcomes, as well as repeat measures of topics covered at age 17. CLS will continue to prospectively harmonise the content with other comparable cohorts, particularly those in the UK, by drawing on comparable measures at a similar age. All surveys are overseen by the CLS Strategic Advisory Board (SAB) which contains representatives from UKRI, Wellcome Trust, Medical Research Council, the scientific community and government departments. The SAB provide high level strategic oversight for CLS to ensure the cohort studies led by the centre are developed, managed and maintained in a manner that maximises their benefit as long-term scientific resources of importance both nationally and internationally, while protecting participants’ interests The SAB ensure that the content is closely aligned with research priorities, as well as the areas of research interest (ARIs) published by government departments. CLS will reflect these priorities when deciding on the major themes which CLS intend to cover at the next sweep collection at age 22 provisionally planned to take place in 2021.

CLS will continue to produce outputs from the study via the UK Data Service in the form of aggregated report for the benefit of the wider research community as previous interest in MCS data has proven to be sought in a large scope of research areas. CLS will also publish papers in a range of journals; however it is not possible to provide detail at this point as to precisely which journals and dates, but the intention is to produce outputs along the same lines as those produced after the previous sweep.

This information has been used to prevent us from seeking to contact those who have died and thus potentially causing distress to family and friends. Information on exit/entries from NHS England have prevented us from using resources contacting individuals who are no longer in Great Britain. The demographic data has been used to update CLS ‘s database with new addresses which have been 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 future surveys.

MCS has provided important evidence to show how circumstances in the very first stages of life can influence later health and development.

Research based on MCS has shown that the likelihood of being breastfed is affected by which day in the week a child is born, which has strong subsequent effects on cognitive development.

The study has contributed crucial evidence on two major health issues facing this generation; the high rates of both mental-ill health and obesity among this age group, now in their teens.

Mental Health study

New research using information from MCS shows a quarter of girls (24%) and one in 10 boys (9%) are depressed at age 14. Researchers from the UCL Institute of Education and the University of Liverpool analysed information on more than 10,000 children born in 2000-01 who are taking part in the Millennium Cohort Study.

At ages 3, 5, 7, 11 and 14, parents reported on their children’s mental health. Then, when they reached 14, the children were themselves asked questions about their depressive symptoms. Based on the 14-year-olds reporting of their emotional problems, 24 per cent of girls and 9 per cent of boys suffer from depression.

The research, published with the National Children’s Bureau, also investigated links between depressive symptoms and family income. Generally, 14-year-olds from better-off families were less likely to have high levels of depressive symptoms compared to their peers from poorer homes. Parents’ reports of emotional problems were roughly the same for boys and girls throughout childhood, increasing from 7 per cent of children at age 7 to 12 per cent at age 11. However, by the time they reached early adolescence at age 14, emotional problems became more prevalent in girls, with 18 per cent having symptoms of depression and anxiety, compared to 12 per cent of boys. Behaviour problems, such as acting out, fighting and being rebellious decreased from infancy to age 5, but then increased to age 14. Boys were more likely than girls to have behaviour problems throughout childhood and early adolescence.

As 14-year-olds’ own reports of their emotional problems were different to their parents’, this research highlights the importance of considering young people’s views on their own mental health.

Obesity study

One in five young people born in the UK at the turn of the century was obese by the age of 14, and a further 15 per cent were found to be overweight. Researchers from the Centre for Longitudinal Studies (CLS) at the UCL Institute of Education analysed information on more than 10,000 teenagers who are taking part in the Millennium Cohort Study. These latest findings reinforce the importance of plans from UK governments to tackle the childhood obesity epidemic over the coming years. In response to public concern over childhood obesity, the most significant steps in recent government policy include the introduction of a levy on added sugar in soft drinks in April 2018, and a programme to reduce sugar across a range of products by 20 per cent by 2020, alongside reductions in salt and saturated fat. The report from CLS, which is published with a briefing paper on Thursday (7 December), reveals that although the same proportion of boys and girls were obese (20%), rates of overweight were slightly higher for girls (16%) than boys (13%). Rates of excess weight varied by country, with almost 40 per cent of young people in Northern Ireland overweight or obese, compared to 38 per cent in Wales, and 35 per cent in both Scotland and England. There was a clear link between young people’s weight and their mothers’ level of education. Almost 40 per cent of 14-year-olds whose mothers had only GCSE qualifications were overweight or obese, compared to 26 per cent of those whose mothers had a degree or higher qualifications. In addition, children who were breastfed as infants, and those whose parents owned their home, had lower odds of being overweight and obese at age 14.

The researchers also analysed information on children’s height and weight at ages 3, 5, 7, 11 and 14, to uncover patterns of weight gain across childhood. They found that rates of overweight and obesity increased slightly from ages 3 to 7, but rose significantly at age 11, from 25 per cent to 35 per cent, with this increase being especially strong among boys. By age 14, however, they discovered that rates of excess weight had stabilised. While boys were slightly less likely to have become overweight and obese than to have become a normal weight by age 14, for girls the opposite was the case.

Below are examples of existing publications using the Millennium Cohort Study data benefiting public health.

Smoking in pregnancy

Several studies based on MCS have looked at how smoking during pregnancy relates to children's development. One group of researchers found that babies with mothers who smoked at any point while they were pregnant weighed on average 146 grams less when they were born (around the weight of a smartphone) than babies with mums who did not smoke. Overall, the more cigarettes a mother smoked a day, the less her baby weighed at birth.

Babies with mothers whose partners smoked around them while they were pregnant also weighed on average 36 grams less (about the weight of a chocolate bar) than those with mothers who were not exposed to smoke.

Another research study has suggested that children are more likely to have behaviour problems at age 3 if their mothers smoke while they are pregnant.

Breastfeeding and child health

An influential study found that babies who were breastfed in the first months of their lives were less likely to go to hospital for diarrhoea or respiratory problems, such as infections and pneumonia. The researchers estimated that half of hospital stays for diarrhoea, and a quarter of stays for respiratory problems, could be prevented every month if all babies in the UK were fed entirely on breast milk for at least six months.

Breastfeeding and child development

Between ages 3 and 7 MCS children took part in a range of activities to show which words they knew and the patterns they could identify in shapes and images. Studies have found that children who were breastfed tended to do better in these exercises and to have less behaviour problems.

Research has also suggested that there is a relationship between breastfeeding and young children's ability to coordinate the movements of their arms and legs and to reach milestones such as standing up for the first time and taking their first steps.

This Data Sharing Agreement (DSA) permits University College London to retain data that was supplied under previous iterations of this DSA. The DSA does not permit any other processing of the data.

The following gives an overview of the study and purposes from historic disseminations.

The Centre for Longitudinal Studies (CLS) at University College London (UCL)requires access to NHS England data for the purpose of the Millennium Cohort Study (MCS) also known as the ‘Child of the New Century’.

MCS is following the lives of around 19000 young people born across England, Scotland, Wales and Northern Ireland in 2000-02.

MCS is renowned worldwide for the evidence it provides on children’s experience of growing up in the United Kingdom in the 21st Century. Since the study’s launch there have been seven attempts to re-contact and gather information from the whole cohort (at ages 9 months, 3 years, 5 years, 7 years, 11 years, 14 years and 17 years). The MCS covers diverse topics as parenting; childcare; schooling and education (e.g academic qualifications, vocational qualifications); daily activities and behaviour; cognitive development; child and parent mental and physical health; employment and education; income and poverty; housing, neighbourhood, and residential mobility; and social capital, ethnicity and identity.

The information collected in previous sweeps of the study has formed the high-quality data resource, that is MCS, for scientific investigation across the life course and domains. The seventh, Age 17 survey (2018-19) added to the data already collected in previous sweeps by updating information on current circumstances of the cohort and experiences they have had since the last sweep. In previous sweeps, schooling will have been the main activity common to the vast majority of cohort members.

CLS have access to NHS England data for the purpose of updating participant contact details and mortality information held on CLS systems and for the purpose of contacting participants and maximise involvement in future sweeps conducted within this study.

CLS have previously received record level, identifiable data linked to the cohort from the following datasets.

- MRIS – Cause of Death Report

- MRIS - List Cleaning Report

- MRIS - Members and Postings Report

- MRIS – Cohort Event Notification Report

- MRIS – Flagging Current Status Report

-

MRIS reports were disbanded in 2020 and CLS received the replacement data sets;

-Demographics (CLS now receive Demographics data via DARS-NIC-408892-F1R1Y)

-Civil Registrations of Deaths

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).

The Economic and Social Research Council (ESRC) are the funder for this study. The funder will have no ability to suppress or otherwise limit the publication of findings.

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.

This Data Sharing Agreement (DSA) permits University College London to retain data that was supplied under previous iterations of this DSA. The DSA does not permit any other processing of the data therefore there will be no new outputs produced under this DSA.

The scientific priorities and questionnaire content will be elaborated and developed in consultation with the academic and policy community with the aim of collecting both information relevant to their lives at age 22 and to later life outcomes, as well as repeat measures of topics covered at age 17. CLS will continue to prospectively harmonise the content with other comparable cohorts, particularly those in the UK, by drawing on comparable measures at a similar age. All surveys are overseen by the CLS Strategic Advisory Board (SAB) which contains representatives from UKRI, Wellcome Trust, Medical Research Council, the scientific community and government departments. The SAB provide high level strategic oversight for CLS to ensure the cohort studies led by the centre are developed, managed and maintained in a manner that maximises their benefit as long-term scientific resources of importance both nationally and internationally, while protecting participants’ interests The SAB ensure that the content is closely aligned with research priorities, as well as the areas of research interest (ARIs) published by government departments. CLS will reflect these priorities when deciding on the major themes which CLS intend to cover at the next sweep collection at age 22 provisionally planned to take place in 2021.

CLS will continue to produce outputs from the study via the UK Data Service in the form of aggregated report for the benefit of the wider research community as previous interest in MCS data has proven to be sought in a large scope of research areas. CLS will also publish papers in a range of journals; however it is not possible to provide detail at this point as to precisely which journals and dates, but the intention is to produce outputs along the same lines as those produced after the previous sweep.

This information has been used to prevent us from seeking to contact those who have died and thus potentially causing distress to family and friends. Information on exit/entries from NHS Digital have prevented us from wasting resources contacting individuals who are no longer in Great Britain. The demographic data has been used to update CLS ‘s database with new addresses which have been 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 future surveys.

MCS has provided important evidence to show how circumstances in the very first stages of life can influence later health and development.

Research based on MCS has shown that the likelihood of being breastfed is affected by which day in the week a child is born, which has strong subsequent effects on cognitive development. More details about this study can be found here http://www.homepages.ucl.ac.uk/~uctpamv/papers/breastfeeding.pdf

The study has contributed crucial evidence on two major health issues facing this generation; the high rates of both mental-ill health and obesity among this age group, now in their teens.

Mental Health study

New research using information from MCS shows a quarter of girls (24%) and one in 10 boys (9%) are depressed at age 14. Researchers from the UCL Institute of Education and the University of Liverpool analysed information on more than 10,000 children born in 2000-01 who are taking part in the Millennium Cohort Study.

At ages 3, 5, 7, 11 and 14, parents reported on their children’s mental health. Then, when they reached 14, the children were themselves asked questions about their depressive symptoms. Based on the 14-year-olds reporting of their emotional problems, 24 per cent of girls and 9 per cent of boys suffer from depression.

The research, published with the National Children’s Bureau, also investigated links between depressive symptoms and family income. Generally, 14-year-olds from better-off families were less likely to have high levels of depressive symptoms compared to their peers from poorer homes. Parents’ reports of emotional problems were roughly the same for boys and girls throughout childhood, increasing from 7 per cent of children at age 7 to 12 per cent at age 11. However, by the time they reached early adolescence at age 14, emotional problems became more prevalent in girls, with 18 per cent having symptoms of depression and anxiety, compared to 12 per cent of boys. Behaviour problems, such as acting out, fighting and being rebellious decreased from infancy to age 5, but then increased to age 14. Boys were more likely than girls to have behaviour problems throughout childhood and early adolescence.

As 14-year-olds’ own reports of their emotional problems were different to their parents’, this research highlights the importance of considering young people’s views on their own mental health.

Obesity study

One in five young people born in the UK at the turn of the century was obese by the age of 14, and a further 15 per cent were found to be overweight. Researchers from the Centre for Longitudinal Studies (CLS) at the UCL Institute of Education analysed information on more than 10,000 teenagers who are taking part in the Millennium Cohort Study. These latest findings reinforce the importance of plans from UK governments to tackle the childhood obesity epidemic over the coming years. In response to public concern over childhood obesity, the most significant steps in recent government policy include the introduction of a levy on added sugar in soft drinks in April 2018, and a programme to reduce sugar across a range of products by 20 per cent by 2020, alongside reductions in salt and saturated fat. The report from CLS, which is published with a briefing paper on Thursday (7 December), reveals that although the same proportion of boys and girls were obese (20%), rates of overweight were slightly higher for girls (16%) than boys (13%). Rates of excess weight varied by country, with almost 40 per cent of young people in Northern Ireland overweight or obese, compared to 38 per cent in Wales, and 35 per cent in both Scotland and England. There was a clear link between young people’s weight and their mothers’ level of education. Almost 40 per cent of 14-year-olds whose mothers had only GCSE qualifications were overweight or obese, compared to 26 per cent of those whose mothers had a degree or higher qualifications. In addition, children who were breastfed as infants, and those whose parents owned their home, had lower odds of being overweight and obese at age 14.

The researchers also analysed information on children’s height and weight at ages 3, 5, 7, 11 and 14, to uncover patterns of weight gain across childhood. They found that rates of overweight and obesity increased slightly from ages 3 to 7, but rose significantly at age 11, from 25 per cent to 35 per cent, with this increase being especially strong among boys. By age 14, however, they discovered that rates of excess weight had stabilised. While boys were slightly less likely to have become overweight and obese than to have become a normal weight by age 14, for girls the opposite was the case.

Below are examples of existing publications using the Millennium Cohort Study data benefiting public health.

Smoking in pregnancy

Several studies based on MCS have looked at how smoking during pregnancy relates to children's development. One group of researchers found that babies with mothers who smoked at any point while they were pregnant weighed on average 146 grams less when they were born (around the weight of a smartphone) than babies with mums who did not smoke. Overall, the more cigarettes a mother smoked a day, the less her baby weighed at birth.

Babies with mothers whose partners smoked around them while they were pregnant also weighed on average 36 grams less (about the weight of a chocolate bar) than those with mothers who were not exposed to smoke.

Another research study has suggested that children are more likely to have behaviour problems at age 3 if their mothers smoke while they are pregnant.

Breastfeeding and child health

An influential study found that babies who were breastfed in the first months of their lives were less likely to go to hospital for diarrhoea or respiratory problems, such as infections and pneumonia. The researchers estimated that half of hospital stays for diarrhoea, and a quarter of stays for respiratory problems, could be prevented every month if all babies in the UK were fed entirely on breast milk for at least six months.

Breastfeeding and child development

Between ages 3 and 7 MCS children took part in a range of activities to show which words they knew and the patterns they could identify in shapes and images. Studies have found that children who were breastfed tended to do better in these exercises and to have less behaviour problems.

Research has also suggested that there is a relationship between breastfeeding and young children's ability to coordinate the movements of their arms and legs and to reach milestones such as standing up for the first time and taking their first steps.

This Data Sharing Agreement permits the retention of the data provided under previous iterations of this Agreement. No new data will be supplied by NHS Digital under this version of the Agreement.

The following provides background information on the purpose of the original study:

The Millennium Cohort Study (MCS) is a multidisciplinary research project following the lives of over 19,000 children in the UK born in 2000/1. It is the most recent of Britain's world-renowned national longitudinal birth cohort studies. Each follows a large number of individuals born at a particular time through the course of their lives, charting the effects of events and circumstances in early life on outcomes and achievements later on. The study has been tracking the Millennium children through their early childhood years and plans to follow them into adulthood. The seven surveys of the MCS carried out so far at 9 months (2001/2), 3 years (2003/4), 5 years (2006), 7 years (2008), 11 years (2012), 14 years (2015) and 17 Years (2018) have built up a uniquely detailed picture of the children of the new century and their families. The study is carried out by the Centre for Longitudinal Studies at the Institute of Education, University College London. It is funded by the UK Research and Innovation (UKRI) formerly known as ESRC and a consortium of UK Government departments.

In 2000/02, when the first survey was carried out, consent to participate in surveys was gained by parents 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, Parents were sent an advance letter advising them about the survey. The letter was accompanied by an information leaflet explaining what is involved. Parents 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. During age 17 survey, Face-to-face interviews were conducted with the cohort members for the first time (including asking if they would be willing to consent to

data linkage). Parental involvement at MCS7 was minimal.

Of the approximately 19000 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 or who may have died at the time of carrying out the next survey. The ongoing success of the study depends on maintaining contact with as large a number of study members as possible and without causing distress to relatives of those who died.

CLS wish to access NHS Digital data for the purpose of updating participant contact details and mortality information held on CLS systems and for the purpose of contacting participants and maximise involvement in future sweeps conducted within this study. The mortality data requested (specified in the data summary below) will serve two purposes:

a) CLS database update- We would also like to continue receiving notifications from NHS-Digital informing us of deaths,embarkations (i.e.emigrations) and exits/entry from the NHS, this will include information on updated addresses. These notifications are used to prevent us from seeking to contact those who have died and thus potentially causing distress to friends and relatives. Notifications regarding departure

from Great Britain helps to prevent us wasting resources trying to locate these individuals. New addresses will be used to invite cohort members to take part in future sweeps of the survey.

b) Use for research- The study aims to follow participants from birth to death, collecting information about all aspects of life in between. Obtaining mortality information is crucial for life-course research, where death represents the final outcome.

Data Summary

CLS are requesting access to record level, identifiable data linked to the cohort from the following reports:

-Demographic extract

-Cancer register extract

-Civil Registration (deaths) extract

UCL's legal bases for processing the data under General Data Protection Regulation is bases under 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' & Article 9(2)(j) 'processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes in accordance with Article 89(1) based on Union or Member State law which shall be proportionate to the aim pursued, respect the essence of the right to data protection and provide for suitable and specific measures to safeguard the fundamental rights and the interests of the data subject'. CLS has received CAG approval to process this data under S251.

University College London (UCL) are the sole Data Controller for this agreement. All Data Processors party to this

agreement are acting upon the instruction of the controller.

This Agreement permits the secure retention of the data only and no other processing.

No new outputs will be produced under this Data Sharing Agreement.

The scientific priorities and questionnaire content will be elaborated and developed in consultation with the academic and policy community with the aim of collecting both information relevant to their lives at age 22 and to later life outcomes, as well as repeat measures of topics covered at age 17. CLS will continue to prospectively harmonise the content with other comparable cohorts, particularly those in the UK, by drawing on comparable measures at a similar age. All surveys are overseen by the CLS Strategic Advisory Board (SAB) which contains representatives from UKRI, Wellcome Trust, Medical Research Council, the scientific community and government departments. The SAB provide high level strategic oversight for CLS to ensure the cohort studies led by the centre are developed, managed and maintained in a manner that maximises their benefit as long-term scientific resources of importance both nationally and internationally, while protecting participants’ interests The SAB ensure that the content is closely aligned with research priorities, as well as the areas of research interest (ARIs) published by government departments. CLS will reflect these priorities when deciding on the major themes which CLS intend to cover at the next sweep collection at age 22 provisionally planned to take place in 2021.

CLS will continue to produce outputs from the study via the UK Data Service in the form of aggregated report for the benefit of the wider research community as previous interest in MCS data has proven to be sought in a large scope of research areas. CLS will also publish papers in a range of journals; however it is not possible to provide detail at this point as to precisely which journals and dates, but the intention is to produce outputs along the same lines as those produced after the previous sweep.

Outputs of the deaths data :

This information has been used to prevent us from seeking to contact those who have died and thus potentially causing distress to family and friends. Information on exit/entries from NHS Digital have prevented us from wasting resources contacting individuals who are no longer in Great Britain. The demographic data has been used to update CLS 's database with new addresses which have been 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 future surveys.

MCS has provided important evidence to show how circumstances in the very first stages of life can influence later health and development.

Research based on MCS has shown that the likelihood of being breastfed is affected by which day in the week a child is born, which has strong subsequent effects on cognitive development. More details about this study can be found here http://www.homepages.ucl.ac.uk/~uctpamv/papers/breastfeeding.pdf

The study has contributed crucial evidence on two major health issues facing this generation; the high rates of both mental-ill health and obesity among this age group, now in their teens.

Mental Health study

New research using information from MCS shows a quarter of girls (24%) and one in 10 boys (9%) are depressed at age 14. Researchers from the UCL Institute of Education and the University of Liverpool analysed information on more than 10,000 children born in 2000-01 who are taking part in the Millennium Cohort Study.

At ages 3, 5, 7, 11 and 14, parents reported on their children’s mental health. Then, when they reached 14, the children were themselves asked questions about their depressive symptoms. Based on the 14-year-olds reporting of their emotional problems, 24 per cent of girls and 9 per cent of boys suffer from depression.

The research, published with the National Children’s Bureau, also investigated links between depressive symptoms and family income. Generally, 14-year-olds from better-off families were less likely to have high levels of depressive symptoms compared to their peers from poorer homes.Parents’ reports of emotional problems were roughly the same for boys and girls throughout childhood, increasing from 7 per cent of children at age 7 to 12 per cent at age 11. However, by the time they reached early adolescence at age 14, emotional problems became more prevalent in girls, with 18 per cent having symptoms of depression and anxiety, compared to 12 per cent of boys. Behaviour problems, such as acting out, fighting and being rebellious decreased from infancy to age 5, but then increased to age 14. Boys were more likely than girls to have behaviour problems throughout childhood and early adolescence.

As 14-year-olds’ own reports of their emotional problems were different to their parents’, this research highlights the importance of considering young people’s views on their own mental health.

Obesity study

One in five young people born in the UK at the turn of the century was obese by the age of 14, and a further 15 per cent were found to be overweight.Researchers from the Centre for Longitudinal Studies (CLS) at the UCL Institute of Education analysed information on more than 10,000 teenagers who are taking part in the Millennium Cohort Study. These latest findings reinforce the importance of plans from UK governments to tackle the childhood obesity epidemic over the coming years.In response to public concern over childhood obesity, the most significant steps in recent government policy include the introduction of a levy on added sugar in soft drinks in April 2018, and a programme to reduce sugar across a range of products by 20 per cent by 2020, alongside reductions in salt and saturated fat. The report from CLS, which is published with a briefing paper on Thursday (7 December), reveals that although the same proportion of boys and girls were obese (20%), rates of overweight were slightly higher for girls (16%) than boys (13%). Rates of excess weight varied by country, with almost 40 per cent of young people in Northern Ireland overweight or obese, compared to 38 per cent in Wales, and 35 per cent in both Scotland and England. There was a clear link between young people’s weight and their mothers’ level of education. Almost 40 per cent of 14-year-olds whose mothers had only GCSE qualifications were overweight or obese, compared to 26 per cent of those whose mothers had a degree or higher qualifications. In addition, children who were breastfed as infants, and those whose parents owned their home, had lower odds of being overweight and obese at age 14.

The researchers also analysed information on children’s height and weight at ages 3, 5, 7, 11 and 14, to uncover patterns of weight gain across childhood. They found that rates of overweight and obesity increased slightly from ages 3 to 7, but rose significantly at age 11, from 25 per cent to 35 per cent, with this increase being especially strong among boys. By age 14, however, they discovered that rates of excess weight had stabilised. While boys were slightly less likely to have become overweight and obese than to have become a normal weight by age 14, for girls the opposite was the case.

Below are examples of existing publications using the Millennium Cohort Study data benefiting public health.

Smoking in pregnancy

Several studies based on MCS have looked at how smoking during pregnancy relates to children's development. One group of researchers found that babies with mothers who smoked at any point while they were pregnant weighed on average 146 grams less when they were born (around the weight of a smartphone) than babies with mums who did not smoke. Overall, the more cigarettes a mother smoked a day, the less her baby weighed at birth.

Babies with mothers whose partners smoked around them while they were pregnant also weighed on average 36 grams less (about the weight of a chocolate bar) than those with mothers who were not exposed to smoke.

Another research study has suggested that children are more likely to have behaviour problems at age 3 if their mothers smoke while they are pregnant.

Breastfeeding and child health

An influential study found that babies who were breastfed in the first months of their lives were less likely to go to hospital for diarrhoea or respiratory problems, such as infections and pneumonia. The researchers estimated that half of hospital stays for diarrhoea, and a quarter of stays for respiratory problems, could be prevented every month if all babies in the UK were fed entirely on breast milk for at least six months.

Breastfeeding and child development

Between ages 3 and 7 MCS children took part in a range of activities to show which words they knew and the patterns they could identify in shapes and images. Studies have found that children who were breastfed tended to do better in these exercises and to have less behaviour problems.

Research has also suggested that there is a relationship between breastfeeding and young children's ability to coordinate the movements of their arms and legs and to reach milestones such as standing up for the first time and taking their first steps.

This Data Sharing Agreement permits the retention of the data provided under previous iterations of this Agreement for an interim period. This is a pragmatic approach to provide an active Agreement whilst enabling University College London to complete the necessary actions to enable a subsequent application to extend the Agreement meeting all applicable data sharing standards as published in NHS Digital’s website (see: https://digital.nhs.uk/services/data-access-request-service-dars/dars-guidance).

The following provides background information on the purpose of the original study:

The Millennium Cohort Study (MCS) is a multidisciplinary research project following the lives of over 19,000 children in the UK born in 2000/1. It is the most recent of Britain's world-renowned national longitudinal birth cohort studies. Each follows a large number of individuals born at a particular time through the course of their lives, charting the effects of events and circumstances in early life on outcomes and achievements later on. The study has been tracking the Millennium children through their early childhood years and plans to follow them into adulthood. The seven surveys of the MCS carried out so far at 9 months (2001/2), 3 years (2003/4), 5 years (2006), 7 years (2008), 11 years (2012), 14 years (2015) and 17 Years (2018) have built up a uniquely detailed picture of the children of the new century and their families. The study is carried out by the Centre for Longitudinal Studies at the Institute of Education, University College London. It is funded by the UK Research and Innovation (UKRI) formerly known as ESRC and a consortium of UK Government departments.

In 2000/02, when the first survey was carried out, consent to participate in surveys was gained by parents 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, Parents were sent an advance letter advising them about the survey. The letter was accompanied by an information leaflet explaining what is involved. Parents 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. During age 17 survey, Face-to-face interviews were conducted with the cohort members for the first time (including asking if they would be willing to consent to

data linkage). Parental involvement at MCS7 was minimal.

Of the approximately 19000 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 or who may have died at the time of carrying out the next survey. The ongoing success of the study depends on maintaining contact with as large a number of study members as possible and without causing distress to relatives of those who died.

CLS wish to access NHS Digital data for the purpose of updating participant contact details and mortality information held on CLS systems and for the purpose of contacting participants and maximise involvement in future sweeps conducted within this study. The mortality data requested (specified in the data summary below) will serve two purposes:

a) CLS database update- We would also like to continue receiving notifications from NHS-Digital informing us of deaths,embarkations (i.e.emigrations) and exits/entry from the NHS, this will include information on updated addresses. These notifications are used to prevent us from seeking to contact those who have died and thus potentially causing distress to friends and relatives. Notifications regarding departure

from Great Britain helps to prevent us wasting resources trying to locate these individuals. New addresses will be used to invite cohort members to take part in future sweeps of the survey.

b) Use for research- The study aims to follow participants from birth to death, collecting information about all aspects of life in between. Obtaining mortality information is crucial for life-course research, where death represents the final outcome.

Data Summary

CLS are requesting access to record level, identifiable data linked to the cohort from the following reports:

-Demographic extract

-Cancer register extract

-Civil Registration (deaths) extract

UCL's legal bases for processing the data under General Data Protection Regulation is bases under 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' & Article 9(2)(j) 'processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes in accordance with Article 89(1) based on Union or Member State law which shall be proportionate to the aim pursued, respect the essence of the right to data protection and provide for suitable and specific measures to safeguard the fundamental rights and the interests of the data subject'. CLS has received CAG approval to process this data under S251.

University College London (UCL) are the sole Data Controller for this agreement. All Data Processors party to this

agreement are acting upon the instruction of the controller.

This Agreement permits the secure retention of the data only and no other processing.

No new outputs will be produced under this Data Sharing Agreement.

The scientific priorities and questionnaire content will be elaborated and developed in consultation with the academic and policy community with the aim of collecting both information relevant to their lives at age 22 and to later life outcomes, as well as repeat measures of topics covered at age 17. CLS will continue to prospectively harmonise the content with other comparable cohorts, particularly those in the UK, by drawing on comparable measures at a similar age. All surveys are overseen by the CLS Strategic Advisory Board (SAB) which contains representatives from UKRI, Wellcome Trust, Medical Research Council, the scientific community and government departments. The SAB provide high level strategic oversight for CLS to ensure the cohort studies led by the centre are developed, managed and maintained in a manner that maximises their benefit as long-term scientific resources of importance both nationally and internationally, while protecting participants’ interests The SAB ensure that the content is closely aligned with research priorities, as well as the areas of research interest (ARIs) published by government departments. CLS will reflect these priorities when deciding on the major themes which CLS intend to cover at the next sweep collection at age 22 provisionally planned to take place in 2021.

CLS will continue to produce outputs from the study via the UK Data Service in the form of aggregated report for the benefit of the wider research community as previous interest in MCS data has proven to be sought in a large scope of research areas. CLS will also publish papers in a range of journals; however it is not possible to provide detail at this point as to precisely which journals and dates, but the intention is to produce outputs along the same lines as those produced after the previous sweep.

Outputs of the deaths data :

This information has been used to prevent us from seeking to contact those who have died and thus potentially causing distress to family and friends. Information on exit/entries from NHS Digital have prevented us from wasting resources contacting individuals who are no longer in Great Britain. The demographic data has been used to update CLS 's database with new addresses which have been 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 future surveys.

MCS has provided important evidence to show how circumstances in the very first stages of life can influence later health and development.

Research based on MCS has shown that the likelihood of being breastfed is affected by which day in the week a child is born, which has strong subsequent effects on cognitive development. More details about this study can be found here http://www.homepages.ucl.ac.uk/~uctpamv/papers/breastfeeding.pdf

The study has contributed crucial evidence on two major health issues facing this generation; the high rates of both mental-ill health and obesity among this age group, now in their teens.

Mental Health study

New research using information from MCS shows a quarter of girls (24%) and one in 10 boys (9%) are depressed at age 14. Researchers from the UCL Institute of Education and the University of Liverpool analysed information on more than 10,000 children born in 2000-01 who are taking part in the Millennium Cohort Study.

At ages 3, 5, 7, 11 and 14, parents reported on their children’s mental health. Then, when they reached 14, the children were themselves asked questions about their depressive symptoms. Based on the 14-year-olds reporting of their emotional problems, 24 per cent of girls and 9 per cent of boys suffer from depression.

The research, published with the National Children’s Bureau, also investigated links between depressive symptoms and family income. Generally, 14-year-olds from better-off families were less likely to have high levels of depressive symptoms compared to their peers from poorer homes.Parents’ reports of emotional problems were roughly the same for boys and girls throughout childhood, increasing from 7 per cent of children at age 7 to 12 per cent at age 11. However, by the time they reached early adolescence at age 14, emotional problems became more prevalent in girls, with 18 per cent having symptoms of depression and anxiety, compared to 12 per cent of boys. Behaviour problems, such as acting out, fighting and being rebellious decreased from infancy to age 5, but then increased to age 14. Boys were more likely than girls to have behaviour problems throughout childhood and early adolescence.

As 14-year-olds’ own reports of their emotional problems were different to their parents’, this research highlights the importance of considering young people’s views on their own mental health.

Obesity study

One in five young people born in the UK at the turn of the century was obese by the age of 14, and a further 15 per cent were found to be overweight.Researchers from the Centre for Longitudinal Studies (CLS) at the UCL Institute of Education analysed information on more than 10,000 teenagers who are taking part in the Millennium Cohort Study. These latest findings reinforce the importance of plans from UK governments to tackle the childhood obesity epidemic over the coming years.In response to public concern over childhood obesity, the most significant steps in recent government policy include the introduction of a levy on added sugar in soft drinks in April 2018, and a programme to reduce sugar across a range of products by 20 per cent by 2020, alongside reductions in salt and saturated fat. The report from CLS, which is published with a briefing paper on Thursday (7 December), reveals that although the same proportion of boys and girls were obese (20%), rates of overweight were slightly higher for girls (16%) than boys (13%). Rates of excess weight varied by country, with almost 40 per cent of young people in Northern Ireland overweight or obese, compared to 38 per cent in Wales, and 35 per cent in both Scotland and England. There was a clear link between young people’s weight and their mothers’ level of education. Almost 40 per cent of 14-year-olds whose mothers had only GCSE qualifications were overweight or obese, compared to 26 per cent of those whose mothers had a degree or higher qualifications. In addition, children who were breastfed as infants, and those whose parents owned their home, had lower odds of being overweight and obese at age 14.

The researchers also analysed information on children’s height and weight at ages 3, 5, 7, 11 and 14, to uncover patterns of weight gain across childhood. They found that rates of overweight and obesity increased slightly from ages 3 to 7, but rose significantly at age 11, from 25 per cent to 35 per cent, with this increase being especially strong among boys. By age 14, however, they discovered that rates of excess weight had stabilised. While boys were slightly less likely to have become overweight and obese than to have become a normal weight by age 14, for girls the opposite was the case.

Below are examples of existing publications using the Millennium Cohort Study data benefiting public health.

Smoking in pregnancy

Several studies based on MCS have looked at how smoking during pregnancy relates to children's development. One group of researchers found that babies with mothers who smoked at any point while they were pregnant weighed on average 146 grams less when they were born (around the weight of a smartphone) than babies with mums who did not smoke. Overall, the more cigarettes a mother smoked a day, the less her baby weighed at birth.

Babies with mothers whose partners smoked around them while they were pregnant also weighed on average 36 grams less (about the weight of a chocolate bar) than those with mothers who were not exposed to smoke.

Another research study has suggested that children are more likely to have behaviour problems at age 3 if their mothers smoke while they are pregnant.

Breastfeeding and child health

An influential study found that babies who were breastfed in the first months of their lives were less likely to go to hospital for diarrhoea or respiratory problems, such as infections and pneumonia. The researchers estimated that half of hospital stays for diarrhoea, and a quarter of stays for respiratory problems, could be prevented every month if all babies in the UK were fed entirely on breast milk for at least six months.

Breastfeeding and child development

Between ages 3 and 7 MCS children took part in a range of activities to show which words they knew and the patterns they could identify in shapes and images. Studies have found that children who were breastfed tended to do better in these exercises and to have less behaviour problems.

Research has also suggested that there is a relationship between breastfeeding and young children's ability to coordinate the movements of their arms and legs and to reach milestones such as standing up for the first time and taking their first steps.

ESRC Millennium Cohort Study (MCS) Child of the New CenturyA longitudinal cohort study involving parental interviews of participating babies, when the baby was about 9-10 months old.  The main aim is to lay the foundations of a multi-purpose dataset to be used into the future by the researchers.  In the short term, it will enable a national study of the childhood in the first years of the new Millennium.The objectives are to:1) Chart the initial conditions of social, economic and health advantages and disadvantages facing new children in the new century, capturing information that the research community of the future will require.2) Provide a basis for comparing patterns of development with that of members of the preceding cohorts.3) Collect information on previously neglected topics, such as father's involvement in the children's care and development.4) Focus on the children's parents as the mist immediate elements of the child's 'background', charting their experience as mothers and fathers of this year's babies, to record how they (and any other children in the family) are adapting to the newcomer, and what their aspirations for his/her future may be.5) Establish intergenerational links including those back to the parent's own childhood.6) Investigate the wider social ecology of the family including, social networks, civic engagement and community facilities and services, splicing in geo-coded data when available.7) Improve the quality and completeness of the health data and linkage on pregnancy and birth by collecting information available on hospital records and birth registrations.  Assessing the health and other outcomes of recruited individuals over a life-long period in relation to the social, health and clinical conditions identified around and at the time of birth.

Yielded Benefits is not a requirement for new applications.