You can accelerate drug development in
Our partners for this research program
[Foundation partners still to be added]
Learn more about
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.
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Benefits to joining
Power to the patients
Have a voice in research
Your de-identified records, and your input through surveys, can help guide treatment research.
Access your medical records
We collect your records, at no cost, in your secure account. View doctors’ notes and your care journey.
Learn from your community
Receive updates on your research impact.
How it works
1. Sign up
In just 15-20 minutes, create your private account, authorize us to get to work on your behalf and share the names of your health facilities. No appointments, no uploads.
2. We get to work
The AllStripes team does the work to collect your records, at no cost, in your secure account. Access doctors’ notes you may have never seen and view your care journey.
3. Power research
Our team de-identifies your records by removing information like name and address, and analyzes your community’s data to help jumpstart or speed up new treatment research.
AllStripes FAQs for patients and caregivers
What is AllStripes?
How does joining AllStripes work?
Will I have to pay a fee to participate and receive access to my health records?
How can my medical records advance research?
How is AllStripes funded?
Can I join an AllStripes program if I don’t live in the U.S.?
Can I contribute records on behalf of my loved one who has passed away?
Privacy and data ownership
Who owns the information and data in the medical records that AllStripes collects for patients and families?
How does AllStripes keep patients’ data safe and confidential?
Why do I need to give my address and phone number, and why is that important for research?
Why are there blank pages and/or black lines in my medical records?
AllStripes Research is approved and monitored by an independent ethics review board called WIRB (Western Institutional Review Board). WIRB is a group of people who review research studies to protect the rights and welfare of human subjects. They provide in-depth regulatory expertise to support development of research protocols and documentation. Read more.
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