Version 2: Applicable from: 5 August 2022
If you’d like to print this fair processing notice or export it as a PDF, please select Ctrl + P on your keyboard (or Cmd+ P for Mac users).
NCDS is one of several national longitudinal cohort studies at the UCL Centre for Longitudinal Studies (CLS). The study follows the lives of more than 17,000 people born in England, Scotland and Wales in a single week of 1958. The study privacy notice provides more information about how we handle your data: https://ncds.info/home/privacy/privacy-notice/. The study Frequently Asked Questions (FAQs) provide detailed information about the study: https://ncds.info/faqs.
Please do contact us if you need more information about the study or the way we use your data:
Call: 0800 0355 761
Post: National Child Development Study, Centre for Longitudinal Studies, UCL Social Research Institute, 20 Bedford Way, London WC1H 0AL
UCL’s Data Protection Officer can be contacted at:
Post: Data Protection Officer, UCL, Gower Street, London WC1E 6BT
We appreciate your participation in the study. Your study data is used by researchers from across the world and is an important resource for public policy and service planning. Your data is used for legitimate reasons connected to the study including to:
Keep in touch with you
Your contact details are used to keep in touch with you and to invite you to take part in surveys and activities that relate to the study (e.g., for our linked data programme).
We collect contact details for people who live with you and contacts outside your household to help us try to find you if we lose touch. We may also use these details in an emergency. We apply to the NHS and government departments for up-to-date contact details and for notifications about participants who have left the UK or died.
Carry out surveys
The answers you give to our survey questions are used for research purposes. Some of our surveys include the collection of sensitive data such as political opinions or information about your health. The survey data we collect is stored securely.
Link data to your study record
With permission, we use your contact details and personal information to link data from government agencies (e.g., your health records) to your survey data. Data from these government agencies is generated when you use their services. Adding this information to the survey data helps to build up an even fuller picture of participants’ lives.
Collect and analyse your biological samples
With your permission, we collected blood and saliva samples from you during the 2002-3 biomedical survey. We are also collecting blood samples as part of the ‘Life in Your Early 60s’ survey taking place in 2020-2023 to carry out health and genetic research. If you give permission, DNA will be extracted from your blood sample and will be used for genetic research. Your DNA will be stored in an accredited laboratory for research purposes. Any left-over blood samples collected as part of the COVID-19 antibody testing project were destroyed by the laboratory.
Share our research data
Our research data (e.g., survey data and linked data) is deposited with the data stores used by CLS so that it can be used for research. This data does not contain any personal details that would enable you to be identified. Our research data is made available to researchers under secure access arrangements.
Share our research findings
We share the findings of our research with the research community. Our surveys sometimes ask you to describe your experiences in your own words. Your responses may be used in communications about the research and study data. Other people will not be able to identify you through your responses.
Record your participation in the study
Where you, your family or contacts, such as your teacher, have completed paper questionnaires or consent forms as part of the study, we store original copies or digital scans of these so that we have a have a record of you taking part in the study and for research purposes.
Understand how you interact with our website and social media
When you visit our website or social media pages, we collect information about how you use our web content.
As the study follows your whole life course, we plan to keep your data for at least as long as the study exists and as long as the law allows us to. We review the data that we hold whenever we receive an individual information rights request from you.
We take the confidentiality and security of your data seriously. We have people, policies, systems and measures in place to keep your data safe. We protect your confidentiality by removing your contact details from your survey responses. These two sets of information are managed by two separate teams. Your data is processed in secure environments under restricted access arrangements to protect your confidentiality. Research data is classified according to sensitivity and deidentified before it is shared outside of CLS. If we share information with other organisations, we will put contracts and safeguards in place that protect your information.
In exceptional circumstances your confidentiality may be broken, for example, if something you tell us indicates that someone is at risk of harm.
This Fair Processing Notice is updated regularly and was last updated on 5 August 2022.