Model consent clauses for rare disease research.

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 Force was set up to develop model consent clauses specific to rare diseases research, that are comprehensive, harmonized, readily accessible, and internationally applicable, facilitating the recruitment and consent of rare disease research

SUBMITTER: Nguyen MT 

PROVIDER: S-EPMC6676617 | biostudies-literature | 2019 Aug

REPOSITORIES: biostudies-literature