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.
Benefits to joining
Power to the patients
Benefits to joining
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 what we’re learning from your community’s data, and your research impact.
I joined AllStripes to help provide a more comprehensive view of the effects and complexities of SCD, and also to help reduce the stigma we face and accelerate the development of cures and treatment options.
community builder and founder of Sikcell
I joined AllStripes to be a part of a community of people who are brought together by the willingness and drive to make an impact.
advocate who lives with achondroplasia
By working with AllStripes, we hope to unlock the power of our medical records and discover potential paths to treatments.
CEO of Cure VCP Disease Inc.
Browse our programs
We are working hard to add new condition programs each month. If you don't see your condition listed, see our FAQ for more information.
AllStripes is the leading research platform dedicated to rare disease.
We are a Public Benefit Corporation on a mission to unlock new treatments for people affected by rare disease, and we’re transforming how patients and families are involved in the research process. We make it easy for participants to access their own medical records and contribute their de-identified information to advance new treatment research – all from home, at no cost.
Our team of experts collects, organizes and analyzes the critical information in each patient's records. This creates a growing pool of new knowledge about each condition that can fuel multiple research efforts with foundations, academic partners and biopharmaceutical companies. The more we know about your condition, the more we can do for your condition.
When was AllStripes created?
AllStripes (formerly RDMD) was co-founded in 2017 by Nancy Yu and Onno Faber, a rare disease patient who was deeply frustrated with the drug development process. With Nancy’s background in biology and health technology, and Onno’s experience as a technology entrepreneur, they teamed up to create a mission-driven company aimed at transforming how rare disease treatments are developed.
Does AllStripes have a research program for my condition?
AllStripes has more than 40 active rare disease research programs and we are adding more every month. If you don't see a research program for your condition of interest on the research programs page, contact a patient advocacy organization or foundation focused on your condition and share your interest in an AllStripes research program.
Patient advocacy organizations and foundation leaders can then contact us through the form on our patient organizations page to learn more and talk with the AllStripes team about what our platform can do for your community.
How does joining AllStripes work?
At AllStripes, we want to make it as easy as possible for you to contribute to research. Here’s more detail on how it works: 1. Sign up (takes about 15-20 minutes): Create your private account, review our research consents and share the names of your health facilities. No appointments, no uploads.
2. We get to work: We do all the behind-the-scenes work to retrieve and process your records. We will send you updates as we request and collect your records.
3. Access your records: Our team will upload all your records, including doctors’ notes you’ve never seen before, into your secure account. You can download your records at any time, or share with doctors or other members of your care team.
4. Power research, from home: Our team de-identifies your records (removing information like name and address), structures the information and combines it with information from the rest of your condition community. Using that new pool of combined knowledge, we analyze patterns in care, symptoms and progression to drive forward treatment research.
5. Receive updates: We’ll keep you updated on what we’re learning from your community and when new studies are added for your condition.
Will I have to pay a fee to participate and receive access to my health records?
No. AllStripes’ commitment to patients and families is that there is never a cost to join our research programs or use the platform.
How can my medical records advance research?
Your (or your loved one’s) medical records contain clues that could help advance treatment research. They can be a rich source of knowledge about the symptoms, progression and impact of your condition on patients and families. After we de-identify the information in your records, by removing information like name and address, your medical journey can help with a wide range of research efforts, including: • Powering new research for your rare disease • Determining important symptoms to target • Speeding up development of treatments by improving trial design • Making multiple research efforts possible at one time
You may also be asked to complete optional surveys within the AllStripes platform. The goal would be to answer specific research questions or provide more insights back to you and your community.
How is AllStripes different from a traditional patient registry?
AllStripes can be a great complement to an existing registry, and you can still join AllStripes if you are part of other registries. A few things that set us apart: 1. AllStripes collects medical records on behalf of patients, removing the burden from patients and caregivers to upload their files or contact doctors.
2. All records in the AllStripes platform are audit-trailed, a requirement for FDA submissions.
3. AllStripes digitizes, structures and abstracts information from medical records, including handwritten notes from doctors that may contain valuable insights.
4. The information in AllStripes is updated over time. AllStripes looks at data from an entire medical history, including pre-diagnosis, and updates data each year to create a much more complete picture.
5. AllStripes is a research resource that can be used many times. Some registries are created for just one study. With AllStripes, the information from one patient community can power multiple research efforts.
Can I join an AllStripes program if I don’t live in the U.S.?
At this time, AllStripes is approved to collect records and conduct research involving patients in the U.S., Canada and the U.K. As we expand to include other countries in the future we will notify the AllStripes community.
In general, we encourage international patients to sign up on the AllStripes platform, even if your country is not yet approved for research. You can still receive the updates and information we provide to your condition community, and you may be able to participate in research when we expand to your country in the future.
Can I contribute records on behalf of my loved one who has passed away?
Yes. Contributing records on behalf of a loved one who has passed away can create a meaningful legacy and provide valuable information to improve the lives of patients and their families for generations to come.
When signing up for AllStripes, our support team may need additional documentation to obtain your loved one’s medical records on your behalf, at no cost. Our goal is to remove the burden and expense you would experience if you requested these medical records on your own. While exact documentation requirements will vary across the U.S., Canada and the U.K., in many cases a death certificate and/or a power of attorney or similar documentation is required.
We encourage those who are legally eligible and interested in donating their loved one’s legacy medical records to begin the sign-up process, and upload the documentation if possible. Our team will reach out if any additional information is required.
Can I join AllStripes if I am involved in another registry, clinical trial and/or research study?
Yes, you can definitely still join AllStripes if you are part of a registry, clinical trial and/or other research studies. We think it’s wonderful when patients and families are able to be active in multiple types of research and encourage participants to do what feels right for them.
AllStripes learns from your experience and medical records, you will not need to change your current care to be part of AllStripes research.
What are other ways I can participate with AllStripes, beyond research?
There are several ways you can collaborate with AllStripes to raise awareness and drive forward research, and one of them is through the AllStripes Ambassador program. The AllStripes Ambassador program invites patients, caregivers and family members to share their experiences on our blog and social media platforms. AllStripes Ambassadors have helped several research programs successfully reach their research recruitment goals and have grown awareness for their communities.
If you, or someone you know, are interested in becoming an AllStripes Ambassador, reach out to email@example.com to learn more.
You can also follow AllStripes on social media and share our stories and resources to help grow awareness in your condition community.