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.

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 England 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 England 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.

When you consented with CAPS, you will 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, 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