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Increasing access to online sources and social networks are changing the environment of rare diseases research. Patient- and parent-networks use these new resources not only to access health information but also to initiate and conduct research. Using current examples of patient or parent-led research (PLR) beyond clinical research, we summarize and discuss potential benefits and pitfalls of PLR.
See Jürg C. Streuli and Effy Vayena. The Promising Revolution of Participant-Led Research in Rare Neurological Diseases; Potential Benefits and Pitfalls. Epileptologie 2015; 32, 177-182