Research & Studies
Citizen Health
Citizen Health helps FOXP1 families collect and structure their medical records for easier analysis — turning everyday healthcare data into research-ready insight for the community.
Official Partner
Every medical record. One family-controlled timeline.
One of the hardest parts of rare-disease research is that medical records live in dozens of disconnected places. Citizen Health pulls those records together into a single, organised, family-controlled timeline.
By opting in, FOXP1 families can contribute their de-identified records to the research community — providing the kind of real-world clinical detail that surveys alone can’t capture.
Benefits
Why FOXP1 families use
Citizen Health
One Central Record
All of your loved one’s records — clinic visits, imaging, labs, therapy notes — pulled into one place and owned by you.
You Stay in Control
You decide what’s shared, with whom, and when. Data can be withdrawn at any time.
Power Discovery
Your contribution helps researchers see clinical patterns that ultimately change care for the whole community.
How It Works
From scattered records to
shared insight
Step 1
Sign Up
Create a free Citizen Health account and invite family members if you choose.
Step 2
Connect Records
Citizen Health securely pulls records from hospitals and providers into your timeline.
Step 3
Choose Sharing
Opt in to contribute de-identified data to FOXP1 research on your own terms.
Step 4
Accelerate Research
Researchers gain a richer picture of FOXP1 syndrome — without families answering the same questions twice.
Citizen Health AI Advocate Webinar
Get Involved
Get started with Citizen Health
Free for families. Set up takes a few minutes and grows with you over time.