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
1. Sign up: Create your secure AllStripes account and review the research consent (takes about 10-20 minutes)
2. AllStripes gets to work: They do all the behind-the-scenes work to collect and process your records, there is no uploading for patients
3. Empower research: Track your contribution to research projects and receive updates on research outcomes
How it benefits you
1. Help power faster, better drug development for your condition
2. Receive all your medical records in a secure account, at no cost to you
3. Get exclusive updates on the progress of our research
4. Be a part of multiple research projects, without leaving home
Want to learn more? Check out this recent video about the Importance of Natural History Studies in Rare Disease Research with Dr. Denise Adams of CHOP and Dr. Caitlin Nichols, Phd.