The potential of patient initiated research in studying rare diseases

Identifying and recruiting study participants with rare and under-diagnosed conditions such as spontaneous coronary artery dissection (SCAD) can be a formidable challenge because no single medical center, even my own organization, Mayo Clinic, has adequate experience and/or patient volume to even begin to perform meaningful research. Still in its infancy, “patient-initiated” research may prove to be the new gold standard for the study of uncommon medical conditions.

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