FB Support Groups Enable Rapid Access to Large Numbers of Patients With Rare Disease

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Investigators conducted a survey study of 214 patients with dermatofibrosarcoma protuberans (DFSP) or their family members using in part existing Facebook patient support groups (FBSG) to recruit respondents. They found the approach provides a “powerful” tool to collect relevant disease information from large numbers of patients with rare diseases.

A team of medical practitioners and patients developed the multiple-choice survey, and after testing the survey twice, posted a survey announcement on FBSGs for DFSP. The survey was live for 3 weeks in 2015. The investigators rapidly collected disease statistics, including information on recurrence, metastasis, surgical outcomes, diagnostic delay, and more, suggesting that FBSGs are useful medical research tools.

One hundred ninety-nine respondents were patients and 15 were family members. The respondents reported a median of 4 years to receive a correct diagnosis after noticing a lesion, ranging from less than 1 year to 42 years. About half the patients (52.3%) believed they received a misdiagnosis at some point, either from a dermatologist, primary care clinician, or another type of physician. Patients first noticed DFSP at a median age of 29.6 years. Many of their lesions appeared initially as flat plaques that eventually became protuberant. Because of this disconnect between the disease name and its clinical presentation, the investigators proposed the alternative term, dermatofibrosarcoma, often protuberant, be adopted. The investigators concluded that “FBSGs appear to be powerful tools to synergize effective and rapid research collaborations with large numbers of international patients with rare disease.” TSJ

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