Achieving Equity in Organ Transplantation: Recommendations for Action Based on the National Academies of Sciences, Engineering, and Medicine Report.

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. The National Academies of Sciences, Engineering, and Medicine study committee's report, Realizing the Promise of Equity in the Organ Transplantation System , reached multiple conclusions and agreed on 14 recommendations for action that can be grouped into 3 areas: (1) achieving equity, (2) improving system performance, and (3) increasing the utilization of available organs. Here, we review overarching areas for improvement, highlighting key recommendations, and suggest implementing actions.

Data Sharing Goals for Nonprofit Funders of Clinical Trials.

Sharing 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. In short, nonprofit funders can drive policies and influence research culture. The purpose of this paper is to detail a set of aspirational goals and forward thinking, collaborative data sharing solutions for nonprofit funders to fold into existing funding policies. The goals of this paper convey the complexity of the opportunities and challenges facing nonprofit funders and the appropriate prioritization of data sharing within their organizations and may serve as a starting point for a data sharing toolkit for nonprofit funders of clinical trials to provide the clarity of mission and mechanisms to enforce the data sharing practices their communities already expect are happening.

Correction: Data Sharing Goals for Nonprofit Funders of Clinical Trials.

[This corrects the article DOI: 10.2196/23011.].