Journal
CONTEMPORARY CLINICAL TRIALS
Volume 30, Issue 1, Pages 55-62Publisher
ELSEVIER SCIENCE INC
DOI: 10.1016/j.cct.2008.09.002
Keywords
Registries; Patient selection; Rare diseases
Funding
- NCRR [RR019259]
- NIH
- Office of Rare Diseases
- EUNICE KENNEDY SHRIVER NATIONAL INSTITUTE OF CHILD HEALTH & HUMAN DEVELOPMENT [U54HD061221] Funding Source: NIH RePORTER
- NATIONAL CENTER FOR RESEARCH RESOURCES [U54RR019259] Funding Source: NIH RePORTER
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Objectives: Strategies for study recruitment are useful in clinical research network settings. We describe a registry of individuals who have self-identified with one of a multiplicity of rare diseases, and who express a willingness to be contacted regarding possible enrollment in clinical research studies. We evaluate this registry and supporting tools in terms of registry enrollment and impact on participation rates in advertised clinical research studies. Methods: A web-based automated system generates periodic and customized communications to notify registrants of relevant studies in the NIH Rare Diseases Clinical Research Network (RDCRN). The majority of these communications are sent by email. We compare the characteristics of those enrolled in the registry to the characteristics of participants enrolled in sampled RDCRN studies in order to estimate the impact of the registry on study participation in the network. Results: The registry currently contains over 4000 registrants, representing 40 rare diseases. Estimates of study participation range from 6-27% for all enrollees. Study participation rates for some disease areas are over 40% when considering only contact registry enrollees who live within 100 mi of a clinical research study site. Conclusions: Automated notifications can facilitate consistent, customized, and timely communication of relevant protocol information to potential research subjects. Our registry and supporting communication tools demonstrate a significant positive impact on study participation rates in our network. The use of the internet and automated notifications make the system scalable to support many protocols and registrants. (C) 2008 Elsevier Inc. All rights reserved.
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