Patient volunteers in clinical trials make essential contributions to cancer research, yet many never learn the outcomes of the studies in which they took part. Historically, returning study results to participants has not been standard practice. However, today, some research organizations are working to change that. The ECOG-ACRIN Cancer Research Group (ECOG-ACRIN) is among those prioritizing efforts to communicate study findings to trial participants and the public.

The Trial Results Summaries Project, launched by ECOG-ACRIN in 2024, aims to ensure that participants are informed of the results of ECOG-ACRIN-led studies in which they took part. The initiative is intended to recognize participants as partners in research by improving communication with them about study outcomes and acknowledging their contributions. In so doing, ECOG-ACRIN is promoting transparency in its clinical research process. This project is the vision of the group’s Cancer Research Advocates Committee, led by Mary Lou Smith, JD, MBA and Lisa Beckendorf.

"When researchers take the time to acknowledge clinical trial participants for the vital role they play in cancer research, their gesture helps build trust in the research process,” says Ms. Smith, a three-time cancer survivor.

The initiative is a collaboration among the ECOG-ACRIN’s advocates, research community, and staff members on the Clinical Education and Awareness Team. It has two parts, described below. 

• Letter to Participants: This letter thanks participants and summarizes study objectives, results, and clinical implications in plain language. It follows a Q&A style format addressing key questions: What did this trial involve, and who is it for? What are the results? What do the results mean for patients? The letter contains a link to the trial’s public record on ClinicalTrials.gov, as well as medical journal publications for more information. Letters are developed collaboratively by ECOG-ACRIN staff, patient advocates, and study leadership and undergo review by the study chair and the National Cancer Institute (NCI) Central Institutional Review Board (CIRB).

Once finalized, they are made available to staff at the clinical sites that participated in the trial. Sites may personalize the letters if they choose, have them signed by the lead physician, and then provide them directly to former trial participants.

• Trial Results Summary: A corresponding public-facing trial results summary accompanies each participant letter. The summaries provide clear, plain-language descriptions of study findings using a standardized format. They are posted publicly on the ECOG-ACRIN website, making them widely accessible to everyone.

The library of trial summaries has grown to nearly 40 studies so far and continues to expand. ECOG-ACRIN appreciates the active participation of physicians, nurses, and other members of the research team in this initiative. Since patient contact information remains with the enrolling institutions, it is the research teams who deliver participant letters to the individuals who made these studies possible. Their involvement in this process is invaluable and plays a vital role in our collective success.

By sharing these letters, clinical sites can help complete the research journey—thanking participants, returning the knowledge they helped generate, and reinforcing the partnership between patients and investigators.

“The vision of our advocates has led to trial results summaries that are a win-win for everyone, including patients, researchers, and the public,” says Peter J. O’Dwyer, MD, ECOG-ACRIN’s group co-chair. Given the size and breadth of the ECOG-ACRIN research portfolio, the project currently focuses on studies with high potential impact. These may include trials that have generated practice-changing findings, resulted in peer-reviewed publications or press releases, involved innovative study designs, or enrolled large patient populations.

As the library of summaries continues to expand, ECOG-ACRIN leaders hope the initiative will serve as a model for other research organizations looking for a practical approach to prioritizing participant-centered communication of clinical trial results. They also hope it will encourage broader adoption of similar practices across the oncology research community.

View the trial results summaries at ecog-acrin.org.

Related:

“What a difference patients make: Honoring the impact of cancer clinical trial participants,” from the November 2025 edition of ECOG-ACRIN’s advocacy newsletter