Version 5: Applicable from: 25 June 2024.
About this fair processing notice
NCDS is one of several national longitudinal cohort studies at the UCL Centre for Longitudinal Studies (CLS). UCL is the Data Controller of the study. The study follows the lives of 18,000 people born in England, Scotland, and Wales in a single week of 1958. The information that you give to the study helps us to research the range of topics that are important for your generation. We share our findings from the study to help researchers find out about society. Please do contact us if you need more information about the study:
Call: 0800 0355 761
Email: ncds@ucl.ac.uk
This notice is for anyone whose data that we hold for the study. It tells you what we do with data for the study and where the data comes from. We use ‘you’ or ‘your’ when referring to study cohort members.
We appreciate the participation of cohort members and their families in the study. Research data from the study about the issues that you face in your life is used by researchers from across the world and is available as an important resource for public policy and service planning. Study data is collected for research purposes under the UK GDPR. Study 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.
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 contact 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. We also use contact details validation services to keep your contact details up to date.
Carry out surveys
The answers given to our survey questions are used for research into the issues that affect your generation. Some of our surveys include the collection of sensitive data such as political opinions or information about health.
Some of our surveys collect information about partners, children, other family members and others you may live with. We ask for this information because family circumstances have a huge impact on people’s lives.
Most surveys are carried out by third parties on our behalf. The third-party organisations may use other organisations to conduct work on their behalf. Some surveys involve the use of international applications (apps).
For our linked data programme
Our linked data programme links a range of external (administrative and geographical) data to study records to build up a fuller picture of participants’ lives.
With your permission, we use your contact details and personal information to link data from government agencies (e.g., health records from the NHS and financial records from the Department for Work and Pensions) to your study record. Data from these government agencies is generated when you use their services and are known as ‘administrative records’.
We also use your address to add information about the area in which you live (e.g. pollution levels) and about your property (e.g. energy efficiency of your home). We have approval from the NHS to be notified when study members die. We receive information about the date and cause of death which is used for important research.
We do not ask your permission for these linkages.
Collect and analyse your biological samples
With your permission, we collected blood and saliva samples from you during the 2002-3 biomedical survey. We asked your permission to extract DNA from your blood sample for genetic research. All samples are stored in an accredited laboratory for research purposes.
We also collected 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 blood samples and 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 with the research community
Our research data (e.g., survey data and linked data) is deposited with the safe data stores used by CLS so that it can be used by researchers (under secure access arrangements) to help them understand your generation. This research data does not contain any personal details that would identify you (or any of your family members).
Share our research findings
We share the findings of our research with the research community and others such as policy makers. 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 unless you have agreed to your name being revealed.
Record your participation in the study
Where you, your family, contacts, or other respondents 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 record of you taking part in the study and as a research archive. We also keep a record of any requests, comments, or complaints about the study.
Understand how our website and social media are used
We collect information about how our social media and web content are used.
As the study follows study members’ whole life course, we plan to keep study 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. In certain circumstances, these rights include The right to be informed; The right of access; The right to rectification; The right to erasure; The right to restrict processing; The right to data portability; The right to object; Rights in relation to automated decision making and profiling.
We take the confidentiality and security of study data seriously. We have people, policies, systems, and procedures in place to keep study data safe. Transfer of study data outside of the UK takes place under secure arrangements.
In exceptional circumstances, study members’ or household confidentiality may be broken, for example, if something we are told indicates that someone is at risk of harm.
The study privacy notice provides more information about how we handle data. We would be happy to answer any questions or concerns that there may be about the way that we process study data. UCL’s Data Protection Officer’s contact details are: data-protection@ucl.ac.uk. You also have the right to contact the UK Information Commissioner for advice and support.
This Fair Processing Notice is updated regularly and was last updated on 25 June 2024.
