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.