One in five people with cancer participate in medical research studies

Researchers from Fred Hutchinson Cancer Center, the American Cancer Society Cancer Action Network and peer institutions released new findings in the Journal of Clinical Oncology showing that when all types of cancer research studies are considered, at least one in five people with cancer, or 21.9%, participate in some form of clinical research.

The study evaluated all categories of cancer studies, such as treatment trials, biorepository studies and quality of life studies—the first time an estimate of participation in all types of cancer studies has been reported. Moreover, enrollment in cancer treatment trials was 7.1%, a notably higher participation rate than previous estimates of 2%–3%.

The study also found that enrollment in treatment trials was over five-fold higher at National Cancer Institute-designated cancer centers than at community sites (21.6% versus 4.1%), reflecting the impact that NCI funding for staff and infrastructure has on an institution's ability to offer trials and recruit patients.

Using deidentified accreditation data provided by the Commission on Cancer, the study updated decades-old estimates for participation in cancer research.

This expanded analysis includes more than 70% of people diagnosed with cancer in the U.S. each year who received care at a variety of clinical settings, from community hospitals and academic medical centers to NCI-designated comprehensive cancer centers. Additionally, the study reflects the broad spectrum of cancer research including different study types and those sponsored by industry, government and other sources.

"As we work to increase participation in cancer research studies and make them more accessible to patients, we need an inclusive, accurate assessment of current participation to inform these policies," said Joseph Unger, Ph.D., MS, a health services researcher and biostatistician at Fred Hutch and lead author of the study.

"While we knew that patients play a significant role in advancing all types of cancer research, now we better understand just how commonly people are participating in all types of cancer studies today."

While previous estimates of participation in cancer research studies were derived solely from government-sponsored trials, the study authors used patient data from a diverse range of trial sponsors and care settings for this analysis. Importantly, the data included settings such as community hospitals, where a majority of U.S. cancer patients receive care.

"We know that most patients with cancer will participate in a clinical trial if given the chance, and the level of enrollment we see at NCI-designated cancer centers shows what participation can be when patients are offered trials," stated Mark Fleury, Ph.D., a policy principle at ACS CAN and senior author of the study.

"These findings emphasize the need to offer more patients in community settings the chance to participate and that will require an investment in these sites that currently isn't there."

People with cancer enrolled in many different types of clinical studies. The study found the following participation rates in each type of clinical study: biorepository (12.9%), treatment (7.1%), registry (7.3%), genetic (3.6%), quality-of-life (2.8%), diagnostic (2.5%) and economic studies (2.4%).

Expanding the types of cancer clinical studies in this analysis demonstrates that there are a variety of ways people choose to participate in cancer research beyond the previous assessments, which were based only on participation in treatment studies.

"Cancer clinical research, in all of its forms, simply cannot be conducted without the contributions of people with cancer," emphasized Dr. Unger.

"These contributions are much more extensive than was previously recognized. Cancer clinical research is a true partnership between those with cancer and those who study and treat cancer."