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Model consent clauses for rare disease research
2019
BMC Medical Ethics
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.
doi:10.1186/s12910-019-0390-x
pmid:31370847
pmcid:PMC6676617
fatcat:ktb6cibb5nbxlhwdg3l7w6eigu