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.
The people most highly …
The potential of patient initiated research in studying rare diseases
