FAQs

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.

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.

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, 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: 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 may have 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.

No. AllStripes’ commitment to patients and families is that there is never a cost to join our research programs or use the platform.

Your (or your loved one’s) medical records can 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. 

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:
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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. 

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. 

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.

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. 

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.

At AllStripes, we believe that patients own their own data, always. Patients who consent to research can opt out at any point. They may download their data to take with them or contribute to outside research. 

If patients or caregivers consent to being involved in AllStripes’ research, researchers will organize the de-identified data from their medical records, combine it with data from other individuals with the same condition, and analyze that data to look for insights and help advance treatment research.

Only properly trained and authorized personnel will have access to patient medical information for processing purposes. AllStripes follows strict policies and procedures to ensure that patient information is protected. To view the full AllStripes Privacy Policy, visit allstripes.com/privacy.

Patients' secure accounts are not accessible to others, unless the patient chooses to share the account with their doctors or caregivers. If a patient (or their legally authorized representative) chooses to participate in AllStripes research through proper informed consent, AllStripes will only share de-identified data with qualified researchers.

Providing this information will help AllStripes’ Operations team to identify which facilities to contact on your behalf and gives AllStripes a way to get in contact with you if there are any issues with your account. Communication is completely voluntary, and a patient or caregiver can opt out at any time. 

It is also helpful for research insights to identify the general location of patients living with a specific condition. This information can be useful for things like choosing trial sites or understanding the impact of travel on patients seeking care. These insights help provide a high-level view of patient location, but your specific address is never shared.

Healthcare facilities sometimes send medical records that include health information that is not associated with you, or release medical records that you have not authorized, e.g. information from a different patient, information that you did not authorize us to collect, or information about other family members. Under applicable privacy guidelines, we may be required to notify the health facility, remove applicable information from your account, and remove or destroy that information from the original copies that AllStripes has stored. For your account this means we remove or black out the applicable information, resulting in the blank pages or black lines you see in your medical record. If you have questions, you can contact us at support@allstripes.com.

Rare disease research is challenging because, all too often, there is simply not enough known about each condition to move research forward.

AllStripes aims to change that by empowering patients and families to securely contribute their de-identified health records to research through our platform. Our team does the work to collect, organize and analyze the information to create a growing source of new knowledge about each condition. 

AllStripes and our research collaborators can then use that knowledge to support treatment research and other efforts, including natural history studies, improving clinical trial design, supporting FDA submissions or nominations for newborn screening panels.

There are three main types of research that patients and caregivers help advance by participating in an AllStripes research program. 

1. Community research — This is conducted by the AllStripes research team, who analyze medical records and deploy surveys within the AllStripes platform to develop insights that are returned to all AllStripes’ participants and any foundation partners.

2. Academic research — This is conducted by academic researchers, clinicians and nonprofit organizations for non-commercial projects to answer research questions, develop new scientific methods or understand a condition’s biological processes.

3. Commercial research — This is conducted by pharmaceutical or biotechnology companies with the intention to design clinical trials, advance treatments and more. AllStripes never allows for exclusivity in any partnership, so de-identified patient data can be used in multiple research projects. 

We believe the more people working on each condition the better, so AllStripes aims to make de-identified data accessible through as many research collaborations as possible.

We work with external research partners (including academic researchers, clinicians and pharmaceutical companies) who have a research question that seeks to advance rare disease research. AllStripes also partners with patient organizations who can apply with a qualified researcher to use the data to answer a specific research question. 

We work with patients, researchers, doctors, foundations and biopharma partners. In each condition, we engage with some of the top experts to better understand the condition, conduct research and jumpstart and accelerate treatment options. 

The most important people we work with are patients and caregivers. You can read more about our commitment to the community in our Public Benefit Corporation charter. We are honored to partner with the rare community to drive research forward!

AllStripes is funded by private investors. These investors are a mission-driven group of companies and individuals who believe that the way rare disease research is done needs to change. Some of these investors include: venture capital companies, philanthropists, executives at well-known companies and individuals who have been personally affected by rare conditions in their families.

AllStripes does not rely on grants or donations, and does not charge patients to use the platform. AllStripes does work with trusted drug development companies who pay fees for our research expertise and to access structured, de-identified information that may help drive their treatment programs forward. This helps sustain AllStripes’ work to invest in additional research projects and rare conditions.