The United States organ transplantation system has recently reached a historic milestone of a cumulative 1 million transplants. Despite this considerable success in providing life-saving organ transplants to patients with end organ failure, there are ample opportunities for improvement, particularly with regard to achieving equity. Recognizing this, Congress directed the National Institutes of Health to fund the National Academies of Sciences, Engineering, and Medicine in conducting a study on deceased donor organ procurement, allocation, and distribution, recommending ways to improve equity and accountability.
View Article and Find Full Text PDFSharing clinical trial data can provide value to research participants and communities by accelerating the development of new knowledge and therapies as investigators merge data sets to conduct new analyses, reproduce published findings to raise standards for original research, and learn from the work of others to generate new research questions. Nonprofit funders, including disease advocacy and patient-focused organizations, play a pivotal role in the promotion and implementation of data sharing policies. Funders are uniquely positioned to promote and support a culture of data sharing by serving as trusted liaisons between potential research participants and investigators who wish to access these participants' networks for clinical trial recruitment.
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