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.
Paroxysmal nocturnal hemoglobinuria (PNH) is a rare blood disease caused by genetic differences in the PIGA gene, which occur within blood-forming cells in bone marrow called stem cells. PIGA genetic differences lead to abnormal stem cells that develop into abnormal blood components. These include red blood cells that are more susceptible to destruction by the immune system. Early destruction of red blood cells (anemia) can cause some of the signs and symptoms of PNH, such as fatigue, weakness, abnormally pale skin, elevated heart rate, shortness of breath and dark urine. People with PNH may also be more likely to develop infections due to deficiency of white blood cells and may develop blood clots due to abnormal platelets. Most people with PNH are diagnosed in adulthood, but children can also be affected. The symptoms are mild for some individuals, while for others, symptoms can be much more serious and even fatal. Treatments for PNH include bone marrow transplant, medications that can mitigate the breakdown of red blood cells and reduce risk of blood clots and blood transfusions to treat anemia, among others.
The latest on our research: The latest on our research: We are jumpstarting our PNH program to accelerate research for the condition. We welcome all patients, caregivers and researchers interested in participating and spreading the word to the PNH community.
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.