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 the data 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
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Commonly asked questions

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
Taysha Gene Therapies logoUltragenyx Pharmaceutical logoHemoshear Therapeutics logo