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Last November, the FSH Society invited its members to participate in a survey designed to gauge what members understand about patient registries and for researchers to gain insight into what kind of information patients expect to learn from registries. Here are the findings, summarized in a slide presentation given by June Kinoshita, FSH Society executive director, at the European Neuromuscular Center’s international workshop on FSHD patient registries. Download here: FSHSociety-ENMC Workshop
I don’t recall if this survey asked if people stating to be FSHD patients have been genetically tested for FSHD or at least for FSHD1. That would be important for anyone making use of FSHD patient registry data to have confidence that the data is truly reflective of FSHD patients or at least separate the data based on degree of confidence.