Join us long term
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. As part of this study we link your data with data from NHS England to gather a greater understanding of how JIA develops for a much longer time than during the normal course of the study.
This is because NHS England 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.
What does being “flagged” mean?
When you consent to be involved in the CAPS study you give consent for your name, date of birth and NHS number (or CHI number if you are in Scotland) to be shared with other national databases (including NHS England). This is for the purpose of matching identifiable information already held by these national databases so that they are able to “flag” you. This flag means that if you experience a really serious illness, such as cancer, then the research studies will be informed of these events directly by the national databases. This is a resource that is really important for research into health and diseases such as JIA, as the information that we get from NHS England and other national databases is added to the information that we collect from your healthcare team. This makes our data more complete, stronger and more reliable. In addition to collecting information from your hospital notes and by linking to NHS England, we also collect a blood or saliva sample for genetic studies.
When you consented with CAPS, you may have opted in (or out) of this data linkage on the consent form when joining the study. This data linkage with continue even after the age of 16 years old. If you would like to opt out of this data linkage you are free to withdraw consent at any time. Please note that NHS England will apply the national opt-out criteria to the data linkage (if applicable).
Please contact the project administrator if you would like to withdraw your consent for participation in the CAPS study or opt out of the data linkage with NHS England, or for more information:
Lianne Kearsley-Fleet, Biologic Studies Group, 1st Floor Bright Building, Manchester Science Park, Pencroft Way, Manchester, M15 6GZ. Tel: +44(0)161 275 1646 Email: Lianne.Kearsley-Fleet@manchester.ac.uk