Powering rare disease R&D

Through AllStripes' two-sided platform, we enable life science partners to generate real-world longitudinal evidence and empower patients to participate in treatment research online while benefiting from their own medical data.
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On one side of the platform — after proper consent and authorization — patients with rare conditions, parents and caregivers can contribute to research by sharing the wealth of data found in their medical records. The records are collected, digitized and uploaded to a patient-friendly electronic portal, where patients and caregivers can access them securely or share them with their care team. The interactive portal also allows the AllStripes research team to share research insights back to patients and collect additional data through surveys.
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On the other side of the platform, trained clinical researchers at AllStripes abstract, de-identify and structure data from participants' medical records. Research partners from academia, non-profit organizations and industry can request access to these audit-trailed data to support natural history studies, longitudinal outcome studies and regulatory inquiries and submissions.

AllStripes is the leading research platform dedicated to rare disease and is transforming how families are involved in development of new treatments. AllStripes makes it easy for patients and caregivers to contribute their de-identified medical records to help advance research from home, at no cost.
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For life sciences, we provide a suite of product offerings tailored to meet your needs, including natural history, patient journey, burden of illness and community engagement. We are a trusted partner throughout the drug development lifecycle to support clinical development, participant recruitment and engagement, regulatory and medical affairs, RWE, HEOR and commercial needs. Partnering with AllStripes maximizes speed to data, research flexibility, regulatory-grade data quality, detailed longitudinal history and participant engagement.

AllStripes recruits patients, parents and caregivers to the platform via digital marketing and collaboration with patient advocacy organizations, researchers and clinicians. All patients (or parents/guardians of children, legal authorized representatives (LARs), including those of adults with diminished capacity) with rare disease are welcome to join the AllStripes platform, though at this time, only participants in the U.S., Canada and the U.K. are eligible to consent to AllStripes research. Participants create an account and are asked to (1) provide a list of facilities where the patient has received care, and (2) sign a release form that allows AllStripes to request their complete medical records on their behalf. Records are digitized, processed, organized and provided to the participant in a private, secure account, at no cost to the patient or family.
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Eligible platform users also have the option to sign AllStripes' IRB-approved research consent. This consent allows de-identified data from the patient's medical records or survey responses to be used in research (identifiable data and medical records are not shared with researchers). AllStripes generates research insights that can be shared with patients, families and the broader rare disease community. AllStripes works with interested collaborators (researchers, patient groups, etc.) to understand what de-identified insights from the records would be beneficial to the community. The de-identified data is summarized for all stakeholders and can be used as the jumping-off point for designing future research studies.

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.
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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 AllStripes 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 www.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.

Yes. The AllStripes platform consists of a research-facing end-to-end data solution for rare disease research that is compliant with regulatory requirements to support evidence for regulatory submissions. Our dedicated research team will work with your team to develop a comprehensive study plan in alignment with your research objectives and provide guidance for data to be included in regulatory submissions.

AllStripes is a research platform that can complement the data being collected with a registry. Our two-sided platform generates regulatory-grade, real-world evidence that can help accelerate new treatments for rare diseases. Many of our partners utilize a traditional registry but are also working with AllStripes because they recognize the limitations of a registry to move research forward.
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Some key differences of AllStripes from a registry include the following: We collect medical records on behalf of patients; all records in the AllStripes platform are audit trailed; we digitize, structure and abstract information from the records; and the data in AllStripes is longitudinally updated. Also, some registries are created for just one study — at AllStripes we can use the data from one patient community to power multiple research programs and drug programs.

The timeline to recruit patients for a specific condition can vary depending on a number of factors. Typically, AllStripes is able to successfully recruit patients for a cohort within 2–3 months due to our direct-to-patient approach and multi-channel recruitment methods.
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In most cases, it takes 4–6 weeks for AllStripes to retrieve medical records from patient facilities, after which the team will digitize, classify and make information available for participants in their accounts. The time it takes to collect medical records can vary and mainly depends on how quickly facilities respond to our request. Under HIPAA, an individual has the right to direct a covered entity to transmit PHI about the individual directly to another person or entity designated by the individual (see 45 CFR 164.524). If requested, covered entities have 30 days (or 60 days if an extension is applicable) to send PHI to the designated recipient.

At AllStripes, we have robust quality and compliance measures in place. Standards that we have implemented include the following: 21 CFR 50/56; 45 CFR 46; ICH GCP; 21 CFR 11/312; GDPR, FDA/EMA guidance documents. In addition, our platform provides a robust audit trail for all data and protocol modifications.

If you’d like to learn more about AllStripes or to schedule a demo, please submit your information through this contact form. You can also email us directly at lifesciences@allstripes.com. We’d love to hear from you and answer any additional questions you may have!