TY - JOUR AU - Nguyen, Minh Thu AU - Goldblatt, Jack AU - Isasi, Rosario AU - Jagut, Marlene AU - Jonker, Anneliene Hechtelt AU - Kaufmann, Petra AU - Ouillade, Laetitia AU - Molnar-Gabor, Fruszina AU - Shabani, Mahsa AU - Sid, Eric AU - Tassé, Anne Marie AU - Wong-Rieger, Durhane AU - Knoppers, Bartha Maria AU - Goldblatt, Jack AU - Isasi, Rosario AU - Kaufmann, Petra AU - Knoppers, Bartha AU - Gabor, Fruzsina Molnar AU - Nguyen, Minh Thu AU - Ouillade, Laetitia AU - Sid, Eric AU - Shabani, Masha AU - Tassé, Anne-Marie AU - Wong-Rieger, Durhane AU - on behalf of the IRDiRC-GA4GH Model Consent Clauses Task Force PY - 2019 DA - 2019/08/01 TI - Model consent clauses for rare disease research JO - BMC Medical Ethics SP - 55 VL - 20 IS - 1 AB - 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. SN - 1472-6939 UR - https://doi.org/10.1186/s12910-019-0390-x DO - 10.1186/s12910-019-0390-x ID - Nguyen2019 ER -