PFAPA and Genetic Testing Questionnaire – UK ONLY

The survey will take approximately 5 minutes to complete.

This questionnaire is designed to explore the use of genetic testing and to assess when a PFAPA diagnosis is given. We at Rare Autoinflammatory Conditions Community – UK (RACC-UK) have already seen a handful of children diagnosed with PFAPA who then have genetic testing, leading to a different diagnosis of Autoinflammatory conditions. We want all patients to be able to have access to genetic testing before any diagnosis is given.
If your child has been diagnosed with PFAPA, please complete this questionnaire.

Privacy notice:
The information that you submit is legally owned by your child, and you can complete this questionnaire as your child’s legal guardian. You are able to withdraw consent at any time.
Rare Autoinflammatory Conditions Community – UK (RACC-UK) will not share your name, child’s name or other personally identifiable data. By completing this questionnaire, you agree to Rare Autoinflammatory Conditions Community – UK (RACC-UK) to store your information in their database for as long as necessary.

Finding and reporting of results:
All results from this survey shall be shared with the UK PFAPA Facebook Group, on our website, and used to influence policy. Findings shall be published in the forms of graphs, anonymising any responses.

Rare Autoinflammatory Conditions Community – UK (RACC-UK)
Registered Charity in England and Wales: 1184846
www.raccuk.com l info@raccuk.com l (+44) 07377091552