FAQs about PID research

Here we provide answers to the questions that people have asked about taking part in research or about ongoing research studies into primary immunodeficiency.

Q. My daughter was diagnosed with CVID at 7 years old. She is now 14 and we are interested in getting involved in any research that may help other affected families. How can we do this?

A. The best place to start is by asking the doctors and nurses involved in your daughter’s care if there are any research studies that would be suitable for you to be involved in.  Some centres are certainly more research active than others but there is sometimes cross- centre collaboration so it’s well worth exploring.  On occasion centres also reach out to us to highlight their studies.

This website page is dedicated to taking part in research which explores the different aspects of taking part and what questions to ask.

Sometimes PID UK does its own research surveys to explore issues such as quality of life, access to treatment etc and we would signpost these to members.

Click here to find a page on the latest research into CVID.

Q. I took part in the BRIDGE study but have not heard back. Is the project still happening?

A. Your clinician should have given you feedback. Not all patients sequences are back yet and some have been transferred into the 100k genome project so do please ask your consultant.

Updated September 2019