Greetings everyone,
I am currently involving in a systematic review research project regarding screening testings’ (ie.: antinuclear antibody (ANA) testing) accuracy on autoimmune diseases (ie: juvenile rheumatoid arthritis). We are in a process of identifying potential key informants (KIs) to be recruited for partaking and contributing in various aspects of the research. We have contacted and obtained agreement from a number of clinicians in both the pediatric and rheumatology fields. But we experience difficulty in identifying people from the patient/parent groups. Diagnostic accuracy (ie: sensitivity and specificity) are fairly technical terms, and we are unsure how much and in what aspect people from the patient/parent end may contribute.
Anyhow, we would like to know as many patient/parent-oriented groups (or initiatives/organizations) as possible specifically focusing on rheumatic diseases (ie: juvenile idiopathic arthritis). So that we can contact for potential KIs from them. There are a few groups we have in mind, such as James Lind, but more number of groups means greater chances of success in finding the right KI.
Any thoughts and suggestions will be much appreciated.