Authors: Nguyen, Minh Thu, Goldblatt, Jack, Isasi, Rosario, Jagut, Marlene, Jonker, Anneliene Hechtelt, Kautmann, Petra, Ouillade, Laetitia, Molnar-Gabor, Fruszina, Shabani, Mahsa, Sid, Eric, Tasse, Anne Marie, Wong-Rieger, Durhane, Knoppers, Bartha Maria, Kaufmann, Bartha, Anne-Marie
Venue: BMC Medical Ethics
Type: Publication
Abstract: Background Rare Disease research has seen tremendous advancements over the last decades, with the development of new technologies, various global collaborative efforts and improved data sharing. To maximize the impact of and to further build on these developments, there is a need for model consent clauses for rare diseases research, in order to improve data interoperability, to meet the informational needs of participants, and to ensure proper ethical and legal use of data sources and participants’ overall protection. Methods A global Task Fo...
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Topics: 
Engineering ethics
Knowledge management
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