Webinar
Date: October 27, 2026
On October 27, as NIH finalizes a policy requiring plain-language summaries for all NIH-supported clinical research, the MRCT Center presented a webinar on returning summary results to study participants. It builds on the Center’s ongoing work on returning both aggregate and individual results. Barbara Bierer opened with background on the topic, then introduced Sylvia Baedorf Kassis, who moderated a discussion on how researchers return summary results to the people who took part in their studies. The panel welcomed Lawrence Appel (Johns Hopkins University), who has returned results to participants for more than 30 years; Abby Gregory (ASCO), who supervises ongoing plain language summaries of the TAPUR Study; and Deborah Mascalzoni (Eurac Research and Uppsala University), whose Cooperative Health Research in South Tyrol (CHRIS) cohort of 13,500 people uses dynamic consent as a governance structure to support results return.
Read the MRCT Center’s comments on the NIH draft policy, submitted October 26 by Barbara Bierer and Sylvia Baedorf Kassis. (see below)
Related, on demand: Just in Time: Responding to the NIH Draft Policy for Sharing Summary Study Results with Participants (September 3), an MRCT Center webinar co-presented with the NIH, in which Barbara Bierer, MRCT Center Faculty Director, introduced the session, followed by Adam Berger, Director of the Division of Clinical and Healthcare Research Policy in the NIH Office of Science Policy, who summarized the NIH thinking behind the draft policy.
Related:
Return of Results Efforts
The original MRCT Center Return of Aggregate Results initiative and recent efforts are described here: https://mrctcenter.org/project/aggregate-results/
Return of Individual Results
https://mrctcenter.org/return-of-individual-results/
Proposal to FDA with Transcelerate in 2017
NIH Draft Policy on Returning Summary-Level Results to Participants
https://grants.nih.gov/grants/guide/notice-files/NOT-OD-26-113.html
NIH Roadmap for engaging the public as partners in clinical research
MRCT Center Clinical Research Glossary
MRCT Center upcoming Health Literacy Month webinar registration:
https://mrctcenter.org/tribe-events/returning-results-to-participants-in-practice