Perspectives of Patients With Dermatofibrosarcoma Protuberans on Diagnostic Delays, Surgical Outcomes, and Nonprotuberance

Key Points Question Can dermatofibrosarcoma protuberans Facebook patient support groups work with researchers to determine risk of recurrence and metastasis, surgical outcomes, symptoms of recurrence, and sources of diagnostic delay? Findings In this multiple-choice survey study, 214 patients with dermatofibrosarcoma protuberans reported a median of 4 years between noticing a lesion and receiving a correct diagnosis (range, <1 to 42 years), and many lesions (87 of 194 [44.8%]) first presented as flat. The mean age at noticing dermatofibrosarcoma protuberans was 29.6 years. Meaning Facebook patient support groups seems to provide rapid access to large numbers of patients with rare diseases and enable synergistic collaborations between savvy patients and medical researchers.