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Using a Participation Monitoring Database to Enhance Recruitment in a Rare Cancer Population
Journal article   Open access   Peer reviewed

Using a Participation Monitoring Database to Enhance Recruitment in a Rare Cancer Population

Michael A. O'rorke, Brian M. Gryzlak, Tao Xu, Bradley D. Mcdowell, Rhonda R. Decook, Nicholas J. Rudzianski, Kimberly C. Serrano, Abigayle M. Wehrheim, Udhayvir S. Grewal, Chandrikha Chandrasekharan, …
Journal of clinical and translational science, Vol.10(1), e40
2026
DOI: 10.1017/cts.2026.10703
PMCID: PMC12975625
PMID: 41822553
url
https://doi.org/10.1017/cts.2026.10703View
Published (Version of record) Open Access

Abstract

Introduction Recruitment for rare disease studies is challenging due to small eligible populations. Traditional clinical research management systems often lack tools to track recruitment contacts prior to enrollment. The NET-PRO study, focused on neuroendocrine tumors (NETs), implemented a participation monitoring system to enhance recruitment efficiency and representativeness. Methods NET-PRO is a multi-center cohort study of 2,538 adults diagnosed with gastroenteropancreatic or lung NETs between January 2018 and September 2024. Recruitment occurred from January 2022 to February 2025 across 14 U.S. medical centers. Sites used flexible recruitment methods (email, mail, phone, in-clinic) and tracked contacts using REDCap-based tools. Participant characteristics were analyzed by enrollment mode (online or mail) and recruitment difficulty (number of contacts required prior to enrollment) using standardized mean differences, chi-square tests, and ANOVA. Results Of 9,279 contacted patients, 2,675 consented (28.8%) and 2,538 enrolled (27.4%). Most enrolled online (83.2%), while 16.8% enrolled by mail. Mail respondents were older, had lower education and income, and more comorbidities. Among those enrolled, Recruitment difficulty was associated with older age, lower education and income, but not comorbidity. Over half of the most difficult-to-recruit participants enrolled online. Contact methods varied by attempt, with email dominating early contacts and phone/mail used more in later attempts. Conclusions A participation monitoring tool supported flexible, multi-modal recruitment and improved sample representativeness in a rare cancer study. Tracking recruitment contacts enabled adaptive strategies and may reduce bias in observational research by enabling better outreach to harder-to-reach populations.
 Data Collection Neuroendocrine Rare Diseases Recruitment Representativeness

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