Twins’ Early Development Study (TEDS): Medical Record Linkage.
King's College London · Academic
In term In term in the September 2026 edition: the latest version runs to 24 July 2027.
- Reference
- DARS-NIC-729560-F2F3S
- Current version
- v2.3
- Term of current version
- 15 June 2026 to 24 July 2027
- Start date
- 21 February 2025
- Data controller
- Sole Data Controller
- Commercial purposes
- No
- Sublicensing
- No
- Files released to date
- 1
Why the data was released
Objective for processing
Kings College London (KCL) requires access to NHS England data for the purpose of the following research project:
Twins’ Early Development Study (TEDS): Medical Record Linkage.
The following is a summary of the aims of the research project provided by KCL:
The Twins Early Development Study (TEDS) is a longitudinal cohort of twins born in England and Wales between 1994-1996, based within King’s College London. Participants were initially recruited when twins were aged 18 months, and have subsequently been assessed on cognitive, health, emotional, and behavioural measures at regular intervals between infancy and adulthood. Through both internal work and external collaborations, TEDS data has contributed to over 450 scientific publications, providing insight into the genetic and environmental influences on development from infancy to early adulthood.
Twin studies provide a powerful tool to investigate the effects of genes and the environment on outcomes across the life course. The primary aim of TEDS is to gain a greater understanding of how genetic and environmental factors influence cognition, health and behaviors across development. From the outset of the study, TEDS has had a particular focus on psychological development, mental health and wellbeing. The most recent wave of data collection at age 26, a peak age of onset for common mental health disorders, focused on understanding the development and maintenance of common mental and physical health outcomes.
The following NHS England Data will be accessed: Demographics – necessary because the purpose of this application is to access up-to-date participant contact details from the Population Demographics Service (PDS) in order to complete fair processing for the entire TEDS cohort.
TEDS is requesting address data to send fair processing materials relating to medical record linkage data and to update the TEDS administrative database to facilitate future participant communications. Consequently, only current contact details are being
requested. Participant contact information will only be used for this purpose.
The level of the Data will be:
• Identifiable – necessary because KCL plan to link to electronic health records for the full TEDS cohort, including participants for whom we do not hold current context details but have not withdrawn from the study. For this reason, we will be requesting current address, GP address, NHS ID, and full name from the PDS for these individuals to complete our fair processing campaign.
The Data will be minimized as follows:
• Limited to a study cohort identified by KCL – A cohort of twins born in England and Wales between 1994-96
• Limited to latest available Demographics data.
KCL is the research sponsor and the controller as the organization 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 the 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 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.
This data will increase the scientific value of the TEDS resource by increasing the proportion of the TEDS sample for whom we hold relevant health-related data. This will address the biases associated with self-report measures, for example recall bias, as well as biases associated with sample attrition. Some individuals may find it more difficult to take part in research due to personal circumstances, and this can bias the sample by failing to represent such individuals. Access to demographic information for TEDS participants for whom we do not have current contact details would help ensure that TEDS research is representative and generalizable to the UK public. This will provide researchers, clinicians, and the public with a greater understanding of the genetic and environmental influences on mental and physical health across development.
The funding is provided by the Medical Research Council (MRC). The funding is specifically for the study described. Funding is in place until 31/12/2025.
The funder will have no ability to suppress or otherwise limit the publication of findings.
South London and Maudsley (SLaM) is a processor acting under the instructions of KCL. SLaM’s role is limited to process and store the data within the SLaM Safe Haven.
A Public and Patient Involvement and Engagement group helped refine the purpose of the research. The group supported the collection of the data for the purposes described above. TEDS engaged in consultation with a group of 40 study participants (both very active and less active twins) during the design of this linkage programme.
Processing activities
KCL will transfer data to NHS England through the SlaM Safe Haven. The data will consist of identifying details (specifically Date of Birth, Postcode, Gender, Family Name and a unique person ID) for the cohort to be linked with NHS England data.
NHS England will provide the relevant records from the Demographics dataset to KCL through the SLaM Safe Haven. The Data will contain directly identifying data items including: Names, NHS Number and Postcode which are required to facilitate the fair processing campaign. The inclusion of the unique person ID is necessary for the study team to confirm which participants have been sent the fair processing material.
The data will then be transferred to King’s College London for further processing to update the TEDS administrative database. The TEDS administrative database is stored on secure database server system. This is implemented in a SQL Server on King’s infrastructure. Access to the database system is carefully controlled and may only be made from KCL-managed computers, which are encrypted. Access is limited to TEDS admin staff directly involved in the processing of participant data.
The Data will be stored on servers at SLaM safe haven.
The SLaM Save Haven stores Data on the Cloud provided by Microsoft Azure.
The Data will be accessed by authorised personnel via remote access.
The Controller(s) must confirm and provide evidence upon audit by NHS England that access via any remote device complies with the data security obligations within this DSA and the Data Sharing Framework Contract.
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.
The above applies in addition to any condition set out elsewhere within the DSA (e.g. who may carry out processing, and for what purpose).
The Data will not leave: England/Wales at any time.
Access is restricted to employees or agents of KCL and SLaM who have authorisation from the Principal Investigator.
All personnel accessing the Data have been appropriately trained in data protection and confidentiality.
The Data will not be linked with any other data.
Researchers from KCL and SLaM will process the Data for the purposes described above.
KCL may transfer copies of variables received from NHS England to Digital Health and Care Wales (DHCW) to process on behalf of KCL for the purposes of obtaining linked data from NHS England which will be available to KCL and other authorised parties through the UK Longitudinal Linkage Collaboration (UKLLC).
DHCW may process the following identifiable fields on behalf of KCL: NHS Number, Date Of Birth, Gender, Latest Address and Postcode
Expected output
The expected outputs of the processing will be :
• Submissions to peer reviewed journals [indicate the expected milestone(s) of frequency of expected submissions]. Papers using TEDS data are regularly submitted for publication in peer reviewed journals. There have been >450 scientific articles already published using TEDS data. The details of these can be found on the TEDS study website (https://www.teds.ac.uk/publications/).
• Presentations at leading clinical and genetic conferences (for example, Royal College of Psychiatrists, World Congress of Behavioural and Cognitive Therapies, World Congress of Psychiatric Genetics, and the Behavior Genetics Association).
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.
The outputs will be communicated to relevant recipients through the following dissemination channels:
• Journals
• Workshops - Following in the footsteps of ALSPAC and TwinsUK, TEDS engaged in consultation with a group of 40 study participants (both very active and less active twins) during the design of this linkage programme. We will invite our volunteer participant advisors back to help shape our dissemination plans.
• Social media - - The TEDS team posts regularly on social media, with links to blogs, papers and presentations as they occur. The TEDS “X” (previously Twitter) account (@TedsProject) has ~2,500 followers and is regularly used by the study team, study principal investigator Professor Eley and other co-investigators to share study updates and recent publications. The TEDS study team is also in regular communication with participants through our social media sites (X, Facebook, Instagram).
• Public events - TEDS research regularly appears in public events (e.g. “Pint of Science”).
• Press/media engagement – The KCL Institute of Psychiatry, Psychology and Neuroscience Press Office supports to promote research findings in the press/media via the news and online publications.
• Public promotion of the research – As discussed above, the TEDS team posts regularly on social media, with links to blogs, papers and presentations as they occur to a large public following. Furthermore, our approach for promoting TEDS research to the wider public is to use high-impact papers to create interest from the media (news, radio, podcasts). The KCL Institute of Psychiatry, Psychology and Neuroscience Press Office consistently supports our media strategy and helps prepare press releases. PI Professor Eley also leads a blog page within her lab (the EDIT Lab), another avenue for sharing information about research findings.
• Participant newsletters - The TEDS team produces and sends an annual newsletter to study participants.
• Reports aimed at participants/patients– TEDS provides summary of findings in the annual newsletter and on the TEDS website.
At this stage, there are not any target dates for the production and dissemination of these outputs. The work associated with this application (accessing contact details from the PDS), is the first stage of this work and we will not be able to specify an exact date until the second stage of work begins.
Expected measurable benefits
The findings of this research study 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.
Mental health disorders, such as anxiety and depression, are on the rise, with some estimates as high as one in four people experiencing a disorder over their lifetime. These rates are especially high among women and young adults and such conditions have a significant negative impact on individuals, families, and society as a whole.
TEDS has over 25 years of prospectively collected data on psychological development, mental and physical health, cognitive development, and environmental risk. There is also genomic data available on a subsample of the full cohort. With the twin structure of the data and the genome-wide data, TEDS offers a unique combination of approaches to examine the genetic and environmental influences on health. A current limitation of voluntary research studies such as TEDS is that not all participants are able to continuously take part. For example, attrition rates are more prevalent among individuals from particular social and economic backgrounds, those with high-risk lifestyles, and/or health difficulties. This can lead to the under representation of certain people in research findings. Ensuring participants who may have lost touch with TEDS have the opportunity to be included in TEDS health record linkages will benefit health and social care by increasing the representativeness of results produced using TEDS data. In turn, this will transform the utility of TEDS to predict those at heightened risk of health related disorders, providing a better understanding of who is likely to be affected and how to best support them as the potential to inform the development of intervention. Such findings could also help healthcare systems to better understand who in the population is at the highest need for support.
• help the system to better understand the health and care needs of populations.
• lead to the identification or improvement of treatments or interventions, or health and care system design to improve health and care outcomes or experience.
• advance understanding of the need for, or effectiveness of, preventative health and care measures for particular populations or conditions such as obesity and diabetes.
• support knowledge creation or exploratory research (and the innovations and developments that might result from that exploratory work).
A better understanding in these areas would lead to new ways to improve and inform patient care. The research will also benefit the public and patient care, by providing nuanced information on who is likely to seek and respond to mental health treatments (medications, therapy), the experiences affecting the development of disorders and treatment seeking, and how best to ensure early identification of those at risk. The linkage to health records and the inclusion of clinical measures will substantially increase the ability of TEDS to tackle these questions.
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.
As mentioned above, TEDS will promote the outputs and findings to this research programme to the scientific community, policymakers and then public in order to optimise the public benefit. We will work with the King’s College London press office and King’s Policy Institute. And promote any findings in accessible blogs, on social media sites and where relevant in news, podcasts, radio format.
Benefits reported so far
The addresses obtained in the previous version of this agreement enabled over 11,000 participants traced with the addresses supplied by NHS England to be included in the TEDS medical record linkage fair processing campaign.
Datasets on the current version
Legal basis for provision: Health and Social Care Act 2012 - s261(5)(d)
| Dataset | Type of data | Sensitivity | Frequency | Confidential data |
|---|---|---|---|---|
| Demographics | Identifiable | Sensitive | One-Off | Section 251 NHS Act 2006 |
Files released
Files released counts only files released externally by DARS. Access granted in NHS England's own systems, such as its Secure Data Environment, is not included.
Patient opt-outs were applied to the one file released under this agreement. About opt-outs
No files recorded as released under the current version. 1 was released under earlier versions, shown in the version history.
Version history
The register lists each renewal of this agreement as a separate row. This site has 3 versions.
DARS-NIC-729560-F2F3S-v2.3 15 June 2026 to 24 July 2027
- Title
- Twins’ Early Development Study (TEDS): Medical Record Linkage.
- Commercial
- No
- Sublicensing
- No
- Datasets
- 1
- Files released
- 0
Datasets: Demographics
What changed from DARS-NIC-729560-F2F3S-v1.3
Text removed is struck through; text added is underlined. Unchanged paragraphs are summarised rather than repeated.
| Field | Was | Became |
|---|---|---|
| Start date | 2026-06-15 | |
| End date | 2027-07-24 |
Processing activities
[1 paragraph unchanged]
NHS England will provide the relevant records from the Demographics dataset to
[15 words unchanged]
Names, NHS Number and Postcode which are required to facilitate the fair
processing campaign. The inclusion of the unique person ID is necessary for the study team to confirm which participants have been sent the fair processing material.
processing campaign. The inclusion of the unique person ID is necessary for the study team to confirm which participants have been sent the fair processing material.
The data will then be transferred to King’s College London for further processing to update the TEDS administrative database. The TEDS administrative database is stored on secure database server system. This is implemented in a SQL Server on King’s infrastructure. Access to the database system is carefully controlled and may only be made from KCL-managed computers, which are encrypted. Access is limited to TEDS admin staff directly involved in the processing of participant data.
The data will then be transferred to King’s College London for further processing to update the TEDS administrative database. The TEDS administrative database is stored on secure database server system. This is implemented in a SQL Server on King’s infrastructure. Access to the database system is carefully controlled and may only be made from KCL-managed computers, which are encrypted. Access is limited to TEDS admin staff directly involved in the processing of participant data
[17 paragraphs unchanged]
KCL may transfer copies of variables received from NHS England to Digital Health and Care Wales (DHCW) to process on behalf of KCL for the purposes of obtaining linked data from NHS England which will be available to KCL and other authorised parties through the UK Longitudinal Linkage Collaboration (UKLLC).
DHCW may process the following identifiable fields on behalf of KCL: NHS Number, Date Of Birth, Gender, Latest Address and Postcode
Benefits reported
Not stated in the previous version; added here.
The addresses obtained in the previous version of this agreement enabled over 11,000 participants traced with the addresses supplied by NHS England to be included in the TEDS medical record linkage fair processing campaign.
Changed only in punctuation, spacing or capitalisation: Objective for processing.
Unchanged: Expected output, Expected measurable benefits.
DARS-NIC-729560-F2F3S-v1.3 25 July 2025 to 24 July 2026
- Title
- Twins’ Early Development Study (TEDS): Medical Record Linkage.
- Commercial
- No
- Sublicensing
- No
- Datasets
- 1
- Files released
- 1
Datasets: Demographics
What changed from DARS-NIC-729560-F2F3S-v0.4
Text removed is struck through; text added is underlined. Unchanged paragraphs are summarised rather than repeated.
| Field | Was | Became |
|---|---|---|
| Start date | 2025-07-25 | |
| End date | 2026-07-24 |
Objective for processing
[6 paragraphs unchanged]
TEDS is requesting address data to send fair processing materials relating to medical record linkage
data.
data and to update the TEDS administrative database to facilitate future participant communications.
Consequently, only current contact details are being
requested. Participant contact information will only be used for this purpose and will not be used to update the TEDS administrative database.
requested. Participant contact information will only be used for this purpose.
[3 paragraphs unchanged]
• Limited to a study cohort identified by KCL – A cohort of twins born in England and Wales between
1994-96, consisting of ~12,000 participants who don’t have an updated address in the TEDS database. Any participants for whom there is a reported death or who have withdrawn from the study, will be excluded from the data linkage.
1994-96
[6 paragraphs unchanged]
This data will increase the scientific value of the TEDS resource by
[81 words unchanged]
ensure that TEDS research is representative and generalizable to the UK public.
This will provide researchers, clinicians, and the public with a greater understanding of the genetic and environmental influences on mental and physical health across development.
This will provide researchers, clinicians, and the public with a greater understanding of the genetic and environmental influences on mental and physical health across development.
[4 paragraphs unchanged]
Processing activities
[1 paragraph unchanged]
NHS England will provide the relevant records from the Demographics dataset to KCL through the SLaM Safe Haven. The Data
will:
will contain directly identifying data items including: Names, NHS Number and Postcode which are required to facilitate the fair
• contain directly identifying data items including: Names, NHS Number and Postcode which are required to facilitate the fair
processing campaign.
None of these details will be used to update the TEDS administrative database.
The inclusion of the unique person ID is necessary for the study team to confirm which participants have been sent the fair processing material.
The Data will not be transferred to any other location.
The data will then be transferred to King’s College London for further processing to update the TEDS administrative database. The TEDS administrative database is stored on secure database server system. This is implemented in a SQL Server on King’s infrastructure. Access to the database system is carefully controlled and may only be made from KCL-managed computers, which are encrypted. Access is limited to TEDS admin staff directly involved in the processing of participant data
[17 paragraphs unchanged]
Benefits reported
Stated in the previous version and removed here.
Yielded Benefits is not a requirement for new applications.
Unchanged: Expected output, Expected measurable benefits.
Objective for processing
Kings College London (KCL) requires access to NHS England data for the purpose of the following research project:
Twins’ Early Development Study (TEDS): Medical Record Linkage.
The following is a summary of the aims of the research project provided by KCL:
The Twins Early Development Study (TEDS) is a longitudinal cohort of twins born in England and Wales between 1994-1996, based within King’s College London. Participants were initially recruited when twins were aged 18 months, and have subsequently been assessed on cognitive, health, emotional, and behavioural measures at regular intervals between infancy and adulthood. Through both internal work and external collaborations, TEDS data has contributed to over 450 scientific publications, providing insight into the genetic and environmental influences on development from infancy to early adulthood.
Twin studies provide a powerful tool to investigate the effects of genes and the environment on outcomes across the life course. The primary aim of TEDS is to gain a greater understanding of how genetic and environmental factors influence cognition, health and behaviors across development. From the outset of the study, TEDS has had a particular focus on psychological development, mental health and wellbeing. The most recent wave of data collection at age 26, a peak age of onset for common mental health disorders, focused on understanding the development and maintenance of common mental and physical health outcomes.
The following NHS England Data will be accessed: Demographics – necessary because the purpose of this application is to access up-to-date participant contact details from the Population Demographics Service (PDS) in order to complete fair processing for the entire TEDS cohort.
TEDS is requesting address data to send fair processing materials relating to medical record linkage data and to update the TEDS administrative database to facilitate future participant communications. Consequently, only current contact details are being
requested. Participant contact information will only be used for this purpose.
The level of the Data will be:
• Identifiable – necessary because KCL plan to link to electronic health records for the full TEDS cohort, including participants for whom we do not hold current context details but have not withdrawn from the study. For this reason, we will be requesting current address, GP address, NHS ID, and full name from the PDS for these individuals to complete our fair processing campaign.
The Data will be minimized as follows:
• Limited to a study cohort identified by KCL – A cohort of twins born in England and Wales between 1994-96
• Limited to latest available Demographics data.
KCL is the research sponsor and the controller as the organization 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 the 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 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.
This data will increase the scientific value of the TEDS resource by increasing the proportion of the TEDS sample for whom we hold relevant health-related data. This will address the biases associated with self-report measures, for example recall bias, as well as biases associated with sample attrition. Some individuals may find it more difficult to take part in research due to personal circumstances, and this can bias the sample by failing to represent such individuals. Access to demographic information for TEDS participants for whom we do not have current contact details would help ensure that TEDS research is representative and generalizable to the UK public. This will provide researchers, clinicians, and the public with a greater understanding of the genetic and environmental influences on mental and physical health across development.
The funding is provided by the Medical Research Council (MRC). The funding is specifically for the study described. Funding is in place until 31/12/2025.
The funder will have no ability to suppress or otherwise limit the publication of findings.
South London and Maudsley (SLaM) is a processor acting under the instructions of KCL. SLaM’s role is limited to process and store the data within the SLaM Safe Haven.
A Public and Patient Involvement and Engagement group helped refine the purpose of the research. The group supported the collection of the data for the purposes described above. TEDS engaged in consultation with a group of 40 study participants (both very active and less active twins) during the design of this linkage programme.
Expected output
The expected outputs of the processing will be :
• Submissions to peer reviewed journals [indicate the expected milestone(s) of frequency of expected submissions]. Papers using TEDS data are regularly submitted for publication in peer reviewed journals. There have been >450 scientific articles already published using TEDS data. The details of these can be found on the TEDS study website (https://www.teds.ac.uk/publications/).
• Presentations at leading clinical and genetic conferences (for example, Royal College of Psychiatrists, World Congress of Behavioural and Cognitive Therapies, World Congress of Psychiatric Genetics, and the Behavior Genetics Association).
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.
The outputs will be communicated to relevant recipients through the following dissemination channels:
• Journals
• Workshops - Following in the footsteps of ALSPAC and TwinsUK, TEDS engaged in consultation with a group of 40 study participants (both very active and less active twins) during the design of this linkage programme. We will invite our volunteer participant advisors back to help shape our dissemination plans.
• Social media - - The TEDS team posts regularly on social media, with links to blogs, papers and presentations as they occur. The TEDS “X” (previously Twitter) account (@TedsProject) has ~2,500 followers and is regularly used by the study team, study principal investigator Professor Eley and other co-investigators to share study updates and recent publications. The TEDS study team is also in regular communication with participants through our social media sites (X, Facebook, Instagram).
• Public events - TEDS research regularly appears in public events (e.g. “Pint of Science”).
• Press/media engagement – The KCL Institute of Psychiatry, Psychology and Neuroscience Press Office supports to promote research findings in the press/media via the news and online publications.
• Public promotion of the research – As discussed above, the TEDS team posts regularly on social media, with links to blogs, papers and presentations as they occur to a large public following. Furthermore, our approach for promoting TEDS research to the wider public is to use high-impact papers to create interest from the media (news, radio, podcasts). The KCL Institute of Psychiatry, Psychology and Neuroscience Press Office consistently supports our media strategy and helps prepare press releases. PI Professor Eley also leads a blog page within her lab (the EDIT Lab), another avenue for sharing information about research findings.
• Participant newsletters - The TEDS team produces and sends an annual newsletter to study participants.
• Reports aimed at participants/patients– TEDS provides summary of findings in the annual newsletter and on the TEDS website.
At this stage, there are not any target dates for the production and dissemination of these outputs. The work associated with this application (accessing contact details from the PDS), is the first stage of this work and we will not be able to specify an exact date until the second stage of work begins.
DARS-NIC-729560-F2F3S-v0.4 21 February 2025 to 20 February 2026
- Title
- Twins’ Early Development Study (TEDS): Medical Record Linkage.
- Commercial
- No
- Sublicensing
- No
- Datasets
- 1
- Files released
- 0
Datasets: Demographics
Objective for processing
Kings College London (KCL) requires access to NHS England data for the purpose of the following research project:
Twins’ Early Development Study (TEDS): Medical Record Linkage.
The following is a summary of the aims of the research project provided by KCL:
The Twins Early Development Study (TEDS) is a longitudinal cohort of twins born in England and Wales between 1994-1996, based within King’s College London. Participants were initially recruited when twins were aged 18 months, and have subsequently been assessed on cognitive, health, emotional, and behavioural measures at regular intervals between infancy and adulthood. Through both internal work and external collaborations, TEDS data has contributed to over 450 scientific publications, providing insight into the genetic and environmental influences on development from infancy to early adulthood.
Twin studies provide a powerful tool to investigate the effects of genes and the environment on outcomes across the life course. The primary aim of TEDS is to gain a greater understanding of how genetic and environmental factors influence cognition, health and behaviors across development. From the outset of the study, TEDS has had a particular focus on psychological development, mental health and wellbeing. The most recent wave of data collection at age 26, a peak age of onset for common mental health disorders, focused on understanding the development and maintenance of common mental and physical health outcomes.
The following NHS England Data will be accessed: Demographics – necessary because the purpose of this application is to access up-to-date participant contact details from the Population Demographics Service (PDS) in order to complete fair processing for the entire TEDS cohort.
TEDS is requesting address data to send fair processing materials relating to medical record linkage data. Consequently, only current contact details are being requested. Participant contact information will only be used for this purpose and will not be used to update the TEDS administrative database.
The level of the Data will be:
• Identifiable – necessary because KCL plan to link to electronic health records for the full TEDS cohort, including participants for whom we do not hold current context details but have not withdrawn from the study. For this reason, we will be requesting current address, GP address, NHS ID, and full name from the PDS for these individuals to complete our fair processing campaign.
The Data will be minimized as follows:
• Limited to a study cohort identified by KCL – A cohort of twins born in England and Wales between 1994-96, consisting of ~12,000 participants who don’t have an updated address in the TEDS database. Any participants for whom there is a reported death or who have withdrawn from the study, will be excluded from the data linkage.
• Limited to latest available Demographics data.
KCL is the research sponsor and the controller as the organization 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 the 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 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.
This data will increase the scientific value of the TEDS resource by increasing the proportion of the TEDS sample for whom we hold relevant health-related data. This will address the biases associated with self-report measures, for example recall bias, as well as biases associated with sample attrition. Some individuals may find it more difficult to take part in research due to personal circumstances, and this can bias the sample by failing to represent such individuals. Access to demographic information for TEDS participants for whom we do not have current contact details would help ensure that TEDS research is representative and generalizable to the UK public.
This will provide researchers, clinicians, and the public with a greater understanding of the genetic and environmental influences on mental and physical health across development.
The funding is provided by the Medical Research Council (MRC). The funding is specifically for the study described. Funding is in place until 31/12/2025.
The funder will have no ability to suppress or otherwise limit the publication of findings.
South London and Maudsley (SLaM) is a processor acting under the instructions of KCL. SLaM’s role is limited to process and store the data within the SLaM Safe Haven.
A Public and Patient Involvement and Engagement group helped refine the purpose of the research. The group supported the collection of the data for the purposes described above. TEDS engaged in consultation with a group of 40 study participants (both very active and less active twins) during the design of this linkage programme.
Expected output
The expected outputs of the processing will be :
• Submissions to peer reviewed journals [indicate the expected milestone(s) of frequency of expected submissions]. Papers using TEDS data are regularly submitted for publication in peer reviewed journals. There have been >450 scientific articles already published using TEDS data. The details of these can be found on the TEDS study website (https://www.teds.ac.uk/publications/).
• Presentations at leading clinical and genetic conferences (for example, Royal College of Psychiatrists, World Congress of Behavioural and Cognitive Therapies, World Congress of Psychiatric Genetics, and the Behavior Genetics Association).
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.
The outputs will be communicated to relevant recipients through the following dissemination channels:
• Journals
• Workshops - Following in the footsteps of ALSPAC and TwinsUK, TEDS engaged in consultation with a group of 40 study participants (both very active and less active twins) during the design of this linkage programme. We will invite our volunteer participant advisors back to help shape our dissemination plans.
• Social media - - The TEDS team posts regularly on social media, with links to blogs, papers and presentations as they occur. The TEDS “X” (previously Twitter) account (@TedsProject) has ~2,500 followers and is regularly used by the study team, study principal investigator Professor Eley and other co-investigators to share study updates and recent publications. The TEDS study team is also in regular communication with participants through our social media sites (X, Facebook, Instagram).
• Public events - TEDS research regularly appears in public events (e.g. “Pint of Science”).
• Press/media engagement – The KCL Institute of Psychiatry, Psychology and Neuroscience Press Office supports to promote research findings in the press/media via the news and online publications.
• Public promotion of the research – As discussed above, the TEDS team posts regularly on social media, with links to blogs, papers and presentations as they occur to a large public following. Furthermore, our approach for promoting TEDS research to the wider public is to use high-impact papers to create interest from the media (news, radio, podcasts). The KCL Institute of Psychiatry, Psychology and Neuroscience Press Office consistently supports our media strategy and helps prepare press releases. PI Professor Eley also leads a blog page within her lab (the EDIT Lab), another avenue for sharing information about research findings.
• Participant newsletters - The TEDS team produces and sends an annual newsletter to study participants.
• Reports aimed at participants/patients– TEDS provides summary of findings in the annual newsletter and on the TEDS website.
At this stage, there are not any target dates for the production and dissemination of these outputs. The work associated with this application (accessing contact details from the PDS), is the first stage of this work and we will not be able to specify an exact date until the second stage of work begins.
Benefits reported
Yielded Benefits is not a requirement for new applications.
Register history
When this agreement appeared in, or was edited in, each monthly edition of the register. Built by comparing every edition this site holds.
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April 2025 —
first listed. 1 version: DARS-NIC-729560-F2F3S-v0.4
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August 2025
1 version added: DARS-NIC-729560-F2F3S-v1.3
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August 2026
1 version added: DARS-NIC-729560-F2F3S-v2.3
Cite this page
NHS England (2026) Data Uses Register, September 2026 edition, agreement DARS-NIC-729560-F2F3S, “Twins’ Early Development Study (TEDS): Medical Record Linkage.”. Read via NHS Data Access Explorer (unofficial), https://healthdatauses.uk/agreements/dars-nic-729560-f2f3s/ (accessed [date]).
This address stays the same, but the page is rebuilt with each monthly edition, so the citation names the edition it shows. Every edition's data is kept in the facts store.
Source: datausesregister_september2026.xlsx, September 2026 edition of the NHS England Data Uses Register. Search that workbook for DARS-NIC-729560-F2F3S to see the original rows.