Using registries to recruit subjects for clinical trials

Tan, Meng H.; Thomas, M.; MacEachern, Mark

doi:10.1016/j.cct.2014.12.012

Cited by 41 publications

(38 citation statements)

References 36 publications

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“…Disease-specific and research registries now exist to facilitate patient identification. 31,32 The potential benefits associated with using registries in trial design and recruitment are not captured in our models. We encourage investigators to consider these potential benefits as well, in the context of their individual research questions.…”

Section: Discussionmentioning

confidence: 99%

Registry-based trials: a potential model for cost savings?

et al. 2020

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Background/Aims:Registry-based trials have emerged as a potentially cost-saving study methodology. Early estimates of cost savings, however, conflated the benefits associated with registry utilisation and those associated with other aspects of pragmatic trial designs, which might not all be as broadly applicable. In this study, we sought to build a practical tool that investigators could use across disciplines to estimate the ranges of potential cost differences associated with implementing registry-based trials versus standard clinical trials.Methods:We built simulation Markov models to compare unique costs associated with data acquisition, cleaning, and linkage under a registry-based trial design versus a standard clinical trial. We conducted one-way, two-way, and probabilistic sensitivity analyses, varying study characteristics over broad ranges, to determine thresholds at which investigators might optimally select each trial design.Results:Registry-based trials were more cost effective than standard clinical trials 98.6% of the time. Data-related cost savings ranged from $4300 to $600,000 with variation in study characteristics. Cost differences were most reactive to the number of patients in a study, the number of data elements per patient available in a registry, and the speed with which research coordinators could manually abstract data. Registry incorporation resulted in cost savings when as few as 3768 independent data elements were available and when manual data abstraction took as little as 3.4 seconds per data field.Conclusions:Registries offer important resources for investigators. When available, their broad incorporation may help the scientific community reduce the costs of clinical investigation. We offer here a practical tool for investigators to assess potential costs savings.

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Section: Discussionmentioning

confidence: 99%

Registry-based trials: a potential model for cost savings?

et al. 2020

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“…Many types of disease registries have been used to identify, screen, and recruit potential subjects for clinical research (8). Registries can quickly and efficiently identify large numbers of potential subjects for screening for research.…”

Section: Discussionmentioning

confidence: 99%

“…Ways to identify such subjects include presentations at clinical rounds, contacting health-care providers, community outreach, paid advertisements, internet, social media, electronic health records, and disease registries (8). Once identified, the next step is to determine whether potential subjects are interested in participating in research.…”

Section: Introductionmentioning

confidence: 99%

Design, development and deployment of a Diabetes Research Registry to facilitate recruitment in clinical research

Tan

Bernstein

Gendler

et al. 2016

Contemporary Clinical Trials

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Background and Aim A major challenge in conducting clinical trials/studies is the timely recruitment of eligible subjects. Our aim is to develop a Diabetes Research Registry (DRR) to facilitate recruitment by matching potential subjects interested in research with approved clinical studies using study entry criteria abstracted from their electronic health records (EHR). Method A committee with expertise in diabetes, quality improvement, information technology, and informatics designed and developed the DRR. Using a hybrid approach, we identified and consented patients interested in research, abstracted their EHRs to assess common eligibility criteria, and contacted them about their interest in participating in specific studies. Investigators submit their requests with study entry criteria to the DRR which then provides a list of potential subjects who may be directly contacted for their study. The DRR meets all local, regional and federal regulatory requirements. Results After 5 years, the DRR has over 5,000 registrants. About 30% have type 1 diabetes and 70% have type 2 diabetes. There are almost equal proportions of men and women. During this period, 31 unique clinical studies from 19 unique investigators requested lists of potential subjects for their studies. Eleven grant applications from 10 unique investigators used aggregated counts of potentially eligible subjects in their applications. Conclusion The DRR matches potential subjects interested in research with approved clinical studies using study entry criteria abstracted from their EHR. By providing large lists of potentially eligible study subjects quickly, the DRR facilitated recruitment in 31 clinical studies.

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“…Participant registries have the potential to increase diversity of participation in trials . The Banner Health Alzheimer's Prevention Registry reports <7% in under‐represented groups including African Americans, Native Americans, and Hispanics and approximately 47% of members preferring not to provide race/ethnicity (personal conversation with Jessica Langbaum, PhD, Principal Scientist and Co‐Director of the Alzheimer's Prevention Initiative) but is focusing more effort on increasing the diversity of its Registry.…”

Section: National Registries For Alzheimer's Disease Studiesmentioning

confidence: 99%

Racially diverse participant registries to facilitate the recruitment of African Americans into presymptomatic Alzheimer's disease studies

Cocroft

Welsh‐Bohmer

Plassman

et al. 2020

Alzheimer's & Dementia

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Introduction The Alzheimer's Disease Prevention Registry (ADPR) of the Joseph and Kathleen Bryan Alzheimer's Disease Research Center at Duke University has been successful in achieving a racially diverse and “research ready” cohort of cognitively healthy volunteers. Methods The ADPR is based on an infrastructure that includes: (1) an administrative leadership team; (2) a coordinating center; (3) an IT management team; (4) a community engagement team; and (5) collaborations with study partners across disciplines. Results The ADPR currently has more than 4677 members, 26% of whom are African American. The ADPR has supported 21 studies including 8 biomarker studies, 7 clinical trials, 4 cognitive neuroscience studies, and 2 studies assessing novel computerized measures. Discussion We describe our experiences establishing and maintaining a diverse ADPR as well as insights on recruitment strategies to increase the representation of African Americans in Alzheimer's disease studies.

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Using registries to recruit subjects for clinical trials

Cited by 41 publications

References 36 publications

Registry-based trials: a potential model for cost savings?

Registry-based trials: a potential model for cost savings?

Design, development and deployment of a Diabetes Research Registry to facilitate recruitment in clinical research

Racially diverse participant registries to facilitate the recruitment of African Americans into presymptomatic Alzheimer's disease studies

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