Information for individuals

What is AllStripes?

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?

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:
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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?

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.

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.

Questions can be directed to support@allstripes.com.

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 ambassador@allstripes.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.