Powering rare disease R&D

AllStripes engages patients and life science partners to deliver the most comprehensive real-world datasets and insights available.

The industry-leading research platform dedicated to rare disease

50+

Launched rare disease programs

250,000+

Medical records received

12,000+

Total years of patient data collected

35+

Number of specialties represented

Partnering with

50+

patient advocacy groups

Medical records from

3,900+

facilities

Spanning average

8+

years per patient

We can help you tackle your biggest research challenges

Through AllStripes' two-sided platform, we enable life science partners to generate regulatory-grade, real-world evidence and empower patients to contribute their longitudinal medical records to research.
Screenshots of the AllStripes platform on a desktop computer and on a smartphone
For patients

Centralized, digitized medical records

Every participant who joins an AllStripes research program receives their (or their loved one's) medical records in a secure account, at no cost. We do all the work to make this a quick and easy process — no appointments, no uploads. Platform benefits include:
  • Web and mobile sign up with AllStripes' virtual support
  • Clear eConsent under WIRB-Copernicus Group central IRB
  • Comprehensive capture of medical records from any medical facility spanning a patient’s history in the US, Canada and UK
  • User-friendly patient portal to access and benefit from records on any device
  • Advanced patient/caregiver survey capabilities
  • Recontact for future studies, trials and events
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For life sciences

Regulatory-grade evidence for your research program

Our real-world data and insights are obtained directly from longitudinal medical records to accelerate your program across its entire lifecycle. Platform benefits include:
  • End-to-end study plan and protocol development
  • Fully managed patient privacy and consent
  • Ability to access and store clinical source documents from any facility, without need for site startup
  • Flexibility to enable multiple research questions and use cases over time
  • Regulatory-grade quality management system, compliance and controls
  • Ability to recontact patients for future studies and events, via AllStripes

Our offerings for life science partners

We are here to support your clinical development, participant recruitment and engagement, regulatory, medical affairs, real-world evidence (RWE), health economics and outcomes research (HEOR), and commercial needs.

Natural history

Regulatory-grade data and insights detailing disease progression from pre-diagnosis through management.

Includes:

  • Consultation with AllStripes research team on study plan development
  • 20 clinical modules and 1 survey series targeting your key research questions
Desktop computer showing a natural history study

Patient journey

Deep insights to track each stage of the patient journey from pre-diagnosis through management.

Includes:

  • 3 patient case studies, highlighting key steps of the patient journey
  • Insights for each stage of the patient journey derived from 15 standard clinical modules
Desktop computer showing a patient journey overview

Burden of illness

Evidence of overall disease costliness focusing on health care resource utilization.

Includes:

  • Health care utilization metrics derived from 10 standard clinical modules
  • Characterization of burden of illness and quality of life provided from a standard AllStripes survey
Desktop computer showing data visualization for burden of illness

Community engagement

Opportunities to better engage patients, foundations and investigators.

Includes:

  • Sponsorship of a poster and report utilizing 5 standard clinical modules and 2 surveys
  • Feature as a partner on blog posts, social media and email newsletter
  • Recruitment and educational opportunities
Image of a phone showing social media engagement and an online patient survey

Our approach

We partner with leading life science companies to accelerate
rare disease research timelines and ultimately improve patient care.
Here's an overview of our end-to-end approach:
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Activation & recruitment

AllStripes activates a condition-specific research program on our platform and recruits participants to sign up through a multi-channel approach. We use a virtual or "site-less" model to enable a 2-week study start-up and access to a broader, more diverse patient population — while reducing the overall burden on patients and caregivers.
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Consenting participants

Through the platform, participants eConsent to research on their de-identified information and authorize AllStripes to retrieve medical records from their facilities. Our centralized IRB protocol and research consent enables broad research topics and re-contact for future studies.
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Retrieving records for the community

Our team collects and digitizes medical records for each participant. Records are shared in a private, secure account to help participants have a complete view of their care history, spanning over 35 specialties, including neurology, genetics, labs, PT/OT/ST and imaging. We do all the legwork, eliminating the burden on patients.
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Structuring de-identified data

AllStripes retrieves and stores all source documents, including unstructured physician notes. We then de-identify records and structure the clinical data gathered in standardized industry formats. Our advanced technology, paired with trained clinical abstraction professionals, enables us to extract key outcomes of clinical progression and quality of life to address critical research questions.
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Delivering insights for your study

Once data is abstracted and quality reviewed, life science partners can access de-identified data and analyses. The AllStripes research team, consisting of PhDs, epidemiologists and genetic counselors will assist with additional analyses to help you derive the most value from the data — helping to ensure that your study objectives are met.
“We partnered with AllStripes to conduct a natural history study of two rare metabolic diseases as understanding the natural disease course will provide insights for designing clinical studies, selecting endpoints and demonstrating the potential benefit of our experimental treatment. We selected AllStripes because their platform minimizes the burden on patients to collect and analyze medical records. We believe our research project through AllStripes is a win-win for all stakeholders - patients, caregivers, researchers and industry.”
– Susan Klees, Vice President
Communications, HemoShear Therapeutics
“We share a common mission with AllStripes — to accelerate therapeutic development for rare diseases. Our partnership will allow patients and parents to not only access and own their medical records, but also become active participants in powering multiple research efforts for life-threatening conditions with limited treatment options.”
– James M. Wilson, M.D., Ph.D.,
  Rose H. Weiss Professor and director
WHY ALLSTRIPES

The go-to partner for rare disease research

Through our end-to-end global research platform, we're advancing rare disease treatments by providing you with the evidence you need to power your study. Advantages of partnering with AllStripes include:
  • Unparalleled expertise in rare disease RWE
  • Dedicated research and data analysis team
  • Trusted brand & strong patient value
  • Multi-channel approach to patient recruitment
  • Longitudinal EHR data across all encounters with access to unstructured notes
  • Site-less approach offers flexibility and speed to data
  • Advanced ePRO / survey capabilities
  • Regulatory-grade data and controls
Photograph of AllStripes staff members having a conversation in an outdoor park

Commonly asked questions

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How does AllStripes’ platform work?
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.

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.

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.
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What are the benefits of partnering with AllStripes?
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.

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.
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How does AllStripes engage with patients and gather patient records?
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.

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.
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How will patient data be used and who owns it?
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.
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How does AllStripes protect patient privacy?
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.
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Can the data AllStripes collects be used to support regulatory submissions?
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.
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How is AllStripes different from a registry?
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.

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.
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What are the typical timelines for recruiting patients for a specific condition? How long does it take to collect the medical records for participants?
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.

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.
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What processes and procedures do you have in place to ensure quality and regulatory compliance?
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.
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Who can I contact for more information?
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!

Ready to transform your approach to generating real-world data for rare disease research? Let’s chat. 

Join leading life science companies in making AllStripes their
trusted rare disease research partner
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