allstripes -frequently asked questions
AllStripes FAQ for Patients and Caregivers
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?
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 on our homepage, you can submit a request to "Jumpstart Your Condition."
When families and foundation leaders submit jumpstart requests, we are better able to determine whether an AllStripes research program would be beneficial to the condition's community. We will reach back out to you for more information, if and when we see there is strong interest from the 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:
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.
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.
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.
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.
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:
AllStripes collects medical records on behalf of patients, removing the burden from patients and caregivers to upload their files or contact doctors.
All records in the AllStripes platform are audit-trailed, a requirement for FDA submissions.
AllStripes digitizes, structures and abstracts information from medical records, including handwritten notes from doctors that may contain valuable insights.
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.
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.
Questions can be directed to firstname.lastname@example.org
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.
Privacy and Data Ownership
Who owns the information and data in the medical records that AllStripes collects for patients and families?
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 generate insights and advance treatment research.
How does AllStripes keep patients’ data safe and con dential?
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.
Why do I need to give my address and phone number, and why is that important for research?
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.
How is AllStripes advancing rare disease research?
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.
Who conducts research with AllStripes?
There are three main types of research that patients and caregivers help advance by participating in an AllStripes research program.
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.
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.
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.
How can researchers access information from the AllStripes platform?
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.
Who do you work with in the rare disease community?
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 P ublic Benefit Corporation charter. We are honored to partner with the rare community to drive research forward!
How does AllStripes partner with rare disease foundations?
AllStripes has more than 40 active rare disease research programs. We partner with foundations and patient advocacy organizations to launch and grow our programs, with the shared goal of advancing new research and providing value to the participating families.
The AllStripes research platform can act as a patient registry for foundations that are not already involved with one, or complement an existing registry. We specialize in the complex regulatory needs for rare disease treatment development, and are able to generate deep, audit-trailed insights from the community’s records that are not possible through more traditional registries.
Foundations that partner with AllStripes receive demographic insights once the program’s recruitment goal is met, and then deeper records-based research insights once we’ve collected and de-identified the community’s information. These insights can be used to engage the community, collaborate with AllStripes to answer specific research questions and more.
How is AllStripes funded?
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.
How does AllStripes identify which rare disease to work on?
We start AllStripes research programs when we identify a need in the community. We may partner with a patient foundation, a researcher, a biopharm company, a government consortium or even a group of patients looking to accelerate treatment development in their condition. Do you want to work with us? Reach out at firstname.lastname@example.org.
AllStripes Research has been approved by WCG IRB, an independent AAHRPP-accredited institutional review board (AllStripes tracking number: 20190315). WCG can be contacted at wcgirb.com or 855-818-2289