Nationally representative estimates of the participation of cancer patients in clinical research studies according to the commission on cancer
Abstract
74 Background: The successful conduct of cancer clinical trials hinges on the willingness of patients to participate. The rate of adult clinical trial participation has been regarded as being < 5%. However, national estimates of trial participation are nearly two decades old, and no evidence based on original data sources has been examined for many years. Moreover, studies about trial participation have focused solely on enrollment to treatment trials, which does not reflect the willingness of patients to contribute to other key elements of clinical research, such as quality of life or biorepository studies. We determined inclusive, contemporary estimates of clinical trial participation for adults with cancer using a national sample of data from 1,200 institutions. Methods: The data were from the Commission on Cancer (CoC), a consortium of cancer-related organizations providing accreditation for both academic and community cancer care facilities across the U.S. CoC enrollment data represent 70% of all cases of cancer diagnosed each year. Deidentified, institution-level aggregate counts of annual enrollment to treatment, biorepository, diagnostic, economic, genetic, prevention, quality of life, registry, and screening studies were examined. Overall, study-type estimates for the period 2013-2017 were estimated. Multiple imputation by chained equations was used to account for missing data, with summary estimates calculated separately by type of program (e.g., NCI-designated cancer programs) and pooled. Results: Across the entire U.S. system, the estimated participation rate to cancer treatment trials was 6.3%. Enrollment to treatment trials was highest at NCI-designated comprehensive cancer centers (18.9%), while for community cancer programs (CCPs) and comprehensive CCPs, treatment trial rates were 4.4% and 3.6%, respectively. Nearly 1 in 7 patients participated in biorepository studies (13.4%), including 39.4% at NCI cancer centers. Patients participated in a wide variety of other study types, including registry (8.1%), prevention (6.4%), genetic (3.6%), quality of life (2.9%), economic (2.7%), diagnostic (2.7%), and screening studies (1.8%). At least 25.4% of adult cancer patients were estimated to participate in one or more cancer clinical research studies. Conclusions: In a first-time use of nationally representative enrollment data from the CoC, enrollment to cancer treatment trials was 6.3%, higher than historical estimates of < 5%. Patients participated in a diverse set of other study types, and taken together, at least one quarter of patients participated in a study. Contributions of adult patients with cancer to clinical research is much more comprehensive than previously understood.
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Only 6% of patients with cancer enroll in clinical trials, and race-, sex-, and age-based disparities persist.
“only 6% of patients with cancer enroll in clinical trials (144) and there continue to be race-, sex-, and age-based disparities within clinical trials (145, 146).”
From Artificial Intelligence in Oncology: Current Landscape, Challenges, and Future Directions (2024) · cites this paper as [144]
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- Authors
- Unger, J. M., & Fleury, M.
- Affiliations
- Fred Hutch Cancer Center (US)
- American Cancer Society (US)
- Venue
- Journal of Clinical Oncology
- Published
- 2021-10-01
- Volume
- 39
- Issue
- 28_suppl
- Pages
- 74-74
- ISSN
- 0732-183X (ISSN-L)
- 1527-7755
- OpenAlex
- W3199196367
- Cited by
- 47
- References
- 0
- Citations by year
- 2026: 2 · 2025: 13 · 2024: 24 · 2023: 5 · 2022: 3
- Type
- conference abstract
- Language
- en
- Open access
- closed
- Locations
- Journal of Clinical Oncology (publishedVersion)
- Funders
- Public Health Sciences Division of the Fred Hutchinson Cancer Research Center
- Topics
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics in Clinical Research
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Health and Medical Research Impacts
- Health Sciences › Medicine › Oncology › Global Cancer Incidence and Screening
- Keywords
- cancer patients, NCI-designated cancer centers, community cancer programs, comprehensive cancer center, cancer registry, genetic research, cancer prevention research, Commission on Cancer, national estimates, research participation rates, cancer research infrastructure, racial and ethnic disparities, socioeconomic disparities
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