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Statement of Data Sharing Goals for Nonprofit Funders of Clinical Trials

By November 2, 2021December 9th, 2021Research Registry

Coetzee et al. reports that nonprofit funders, including disease advocacy and patient-focused organizations, play an important role in the promotion and implementation of data sharing policies in clinical research trials which can help to drive policies and influence research culture. Eight goals are highlighted for nonprofit funders of clinical trials: encouraging the co-development of data sharing policies with patient and lay communities, incorporate data sharing concepts and policies as early as possible in clinical trials, use transparent and FAIR approval processes for data access, promote the development of a sustainable and feasible data sharing infrastructure, promote and support the adoption of standards, standard language, and common data elements, include incentives and enforce requirements in funding structures, provide funding for data sharing, and incorporate previous data sharing as a measure of impact. These goals promote a data sharing toolkit for nonprofit funders.

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