CLOVES Syndrome Community is excited to partner with the medical data science company AllStripes to create a research database that will power new PIK3CA-related overgrowth spectrum (PROS) research studies. To move this research forward, we’re looking for families/patients willing to contribute their medical records to make this effort as strong as possible. All data shared with researchers is de-identified, or anonymized, meaning no identifying information like name or phone number is shared.
To learn more or sign up visit: allstripes.com/pros.
Should you choose to participate, you’ll be able to learn from the experiences of other patients, receive research updates and can access all your medical records in a secure AllStripes account at no cost. AllStripes does the work to collect all your medical records on your behalf.
How it works
- Sign up: Create your secure AllStripes account and review the research consent (takes about 10-20 minutes)
- AllStripes gets to work: They do all the behind-the-scenes work to collect and process your records, there is no uploading for patients!
- Empower research: Track your contribution to research projects and receive updates on research outcomes
How it benefits you
- Help power faster, better drug development for your condition
- Receive all your medical records in a secure account, at no cost
- Get exclusive updates on the progress of our research
- Be a part of multiple research projects, without leaving home