Analysis and validation of a Parkinson’s disease register as a recruitment tool for clinical studies

Carroll, Camille; Palmer, Amy E.; Cosby, Christine; Zajicek, John

doi:10.1186/1745-6215-12-s1-a118

Cited by 2 publications

(2 citation statements)

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“…A Parkinson’s disease registry with access to the patients’ medical records is available (27). In Alzheimer’s disease, registries are established and maintained by research groups to recruit patients (28).…”

Section: Discussionmentioning

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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Section: Discussionmentioning

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

View full text Add to dashboard Cite

show abstract

“…advertisements in newspapers) and use of generic databases have a low likelihood of reaching PD patients since the disease has a relatively low prevalence (<5%), in comparison with cardiovascular or psychiatric conditions [10]. On the other hand, the experience of the "Parkinson's Register of the Dementias and Neurodegenerative Diseases Research Network" in South West of England demonstrated that a register of research-interested PD patients has the potential to maximize inclusivity [8].…”

Section: Infrastructurementioning

confidence: 99%

Recruitment strategies and patient selection in clinical trials for Parkinson's disease: Going viral and keeping science and ethics at the highest standards

Picillo

Kou

Barone

et al. 2015

Parkinsonism & Related Disorders

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Analysis and validation of a Parkinson’s disease register as a recruitment tool for clinical studies

Cited by 2 publications

References 0 publications

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

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

Recruitment strategies and patient selection in clinical trials for Parkinson's disease: Going viral and keeping science and ethics at the highest standards

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