Flagging for Long-Term Follow-Up
An important part of the study is Flagging for Long-term Follow-up on National Health Service (NHS) Digital, or in Scotland via the National Health Service Central Register (NHSCR). Both organisations collect statistics on health outcomes across the United Kingdom in collaboration with the NHS. Examples of this data include information on any resident of the UK who dies and anybody who develops a cancer.
Researchers can “flag” the details of CAPS participants with NHS Digital such that in the rare event one of these health outcomes occurs, the researchers will be informed. This allows them to have almost 100% complete information on these rare outcomes. With your permission, your name, date of birth, gender, address and NHS number would be “flagged” with NHS Digital. This will allow us to study very long-term outcomes, far into adulthood, in children who have or have had arthritis. In addition, NHS Digital collects Hospital Episode Statistics (HES), which is a database containing details of all admissions, outpatient appointments and A&E attendances at NHS hospitals in England. This will all help us enhance the data we collect through the study and should lead to better understanding of the course of the illness and help in choosing the best treatment for children in the future.
Participants can opt-out, withdraw consent or find out how your data is being processed at any time by contacting the CAPS team. You can also opt out when joining the study by not initialling the relevant box on the consent form.