There is little long term research into JIA and one of the main aims of CAPS is to find out who gets better in adulthood, who doesn’t and why. NHS Digital and NHSCR (NHS Central Register) allow us to study how JIA develops for a much longer time than during the normal course of the study.
This is because NHS Digital and NHSCR collect information on health outcomes and hospital admissions across the United Kingdom. With your permission, the CAPS researchers can use this information in two ways.
The first is through ‘flagging’ of a study participant’s NHS health records to notify the research team of very rare serious health outcomes.
The second way is through linking research data with data routinely collected though hospital records (e.g. when a child is admitted to hospital) so as to provide a more detailed picture of the children’s health outcomes that could benefit the research.
We will only do this with your consent and any identifiable data will not be shared with anyone outside the study team, aside from NHS Digital/NHSCR to identify your child on the system (name, date of birth, gender, address and NHS number are used for this).
This is a resource that is very important for research into health and diseases such as JIA, as the information that we get from NHS Digital/NHSCR and other national databases is added to the information that we normally collect from you as part of the study, which makes our data more complete, stronger and more reliable.
If you are part of CAPS already you will have opted in (or out) of this system on the consent form when joining the study, though you are free to withdraw consent at any time. For more information please contact the study coordinator (details below).
Andrew Smith (Study Coordinator), Room 2.509 Stopford Building, Centre for Musculoskeletal Research, University of Manchester, Oxford Road, Manchester, M13 9PT. Tel: 0161 275 1656 Email: firstname.lastname@example.org.
Arthritis Research UK Centre for Epidemiology
Centre for Musculoskeletal Research
School of Biological Sciences
Faculty of Biology, Medicine and Health