The MRCT Center first convened a multi-stakeholder workgroup in December of 2015 to address the absence of standard guidelines and criteria related to returning individual research results to participants. These recommendations were released in guidance and toolkit documents in 2017.
As the field and thinking on this topic evolved, it became clear that a need remained for operational and implementation-oriented tools and resources; while there was consensus on the importance of returning individual research results, adoption of the practice was lagging.
To respond to this need, the MRCT Center convened a taskforce in January of 2021 to outline the challenges associated with returning results and create guidance to help researchers address and move beyond those challenges. Through the work of that taskforce, this website was born.
An important aspect of this work was the guiding voice of patient advocates who contributed their stories and perspectives to the updated recommendations. Their input kept the goal of this initiative in focus: to support the research enterprise in respectfully and meaningfully honoring the essential contributions and voluntarism of study participants in clinical trials.
The updated resources on this website were released in March of 2022. We are proud of the advancements made in these resources and have our sights set on work to come. Specifically, further expansion of this work will include updated recommendations on returning genetic results, guidance on returning results to parents and/or guardians, resources for biobanks, and more.
We encourage the research community to contact us with suggestions on areas to expand or improve.