Your (or your loved one’s) medical records contain clues that can lead to new treatments.
AllStripes researchers learn from patient records what would truly improve quality of life.
Using cutting-edge tech we analyze your community’s data to improve trial design and chances of success.
Your community’s de-identified records can advance multiple treatment studies.
We do the work to collect all your records, at no cost, in your secure account. Access doctors’ notes you’ve never seen.
See how your rare disease journey compares to others with your condition, and what’s helping.
We’ll send you exclusive updates on the studies you’re contributing to and how you’re driving forward research.
PIK3CA-related overgrowth spectrum (PROS) is a group of rare conditions that cause overgrowth of various parts of the body due to mutations in the PIK3CA gene. PROS is progressive and symptoms can be present at birth or develop in early childhood. In PROS conditions, malformations may be seen in several different areas of the body, including the lymphatic and vascular systems, bones, fat, and central nervous system, depending on the specific PROS condition. Overlap between conditions can be seen. The degree of severity can range from mild to severe and can cause pain, difficulty with mobility, complications of the blood, loss of function in body systems, and an array ofneurological complications.
Specific PROS conditions include the following: CLAPO syndrome, CLOVES syndrome, facial Infiltrating lipomatosis (FIL), fibroadipose hyperplasia (FAO/FH), fibro-adipose vascular anomaly (FAVA), hemihyperplasia-multiple lipomatosis syndrome (HHML syndrome), hemimegalencephaly (HME), Isolated Lymphatic Malformations (ILM), Klippel-Trenaunay syndrome (KTS), and megalencephaly-capillary malformation syndrome (M-CM/MCAP). Somepatients are diagnosed with a specific PROS condition, while others receive an umbrelladiagnosis of PROS.
Treatment for a PROS condition may involve multiple surgeries, drug treatment,interventional radiology procedures, special education, and speech and physical therapies.
1. Sign up
Create your private account and review our research consent (takes about 10 minutes)
2. We get to work
We do all the behind-the-scenes work to retrieve and process your records
3. Impact research
Power multiple research projects at once by contributing your de-identified data
We believe that the only way to keep data accessible to the researchers who need it is by enabling patients to own and control their own data. Patients decide for themselves whether they want to privately and securely contribute to research, rather than having the decision made on their behalf.
We aim to make useful data accessible to all researchers who have legitimate research questions or research programs. For academic research, we offer access without charge. We take research ethics seriously, and we have policies in place to ensure that research is conducted with integrity.
We don’t like to take sides—we give all members of the community the option to get involved. Success in rare disease research takes a village and we always welcome additional collaborators who can advance and benefit from the mission.
Our primary mission is to accelerate drug development, so we prioritize generating insights specifically relevant to therapeutic research. We invest deeply in quality, security, and compliance to make this a reality.