Aim
We studied the use of patient/disease registries to recruit potential subjects
for prospective clinical trials - describing the number, types and major benefits of
using this approach.
Methods
In December 2013, we conducted a focused database search in PubMed, EMBASE, and
Web of Science for studies (English language only) that used registries to recruit
subjects for clinical trials published in 2004-2013. Of the 233 unique citations
identified, 21 used registries to recruit subjects - 10 papers and 11 abstracts.
Pearling and search for subsequent full papers of the abstracts identified 4 more
papers.
Results
Our analysis, based on these 25 citations, showed 14 are related to cancer, 3
to diabetes mellitus, 1 each to stroke, asthma, and celiac disease and 5 are disease
neutral. Many types of registries (population-based cancer, quality improvement,
disease-specific, web-based disease-neutral registries, local general practice
registers, and national health database) are used to recruit subjects for clinical
trials and uncover new knowledge. Overall, 16 registries are in the US, 4 in UK, 1 each
in Canada, Spain, Australia and I in many countries. Registries can identify very large
number of subjects for screening for eligibility for clinical trials, especially in very
large trials, rare disease trials, and trials involving minority patients.
Conclusions
Registries can retrospectively identify very large numbers of potential
subjects for screening for eligibility and enrollment in prospective clinical trials.
This matching can lead to more timely recruitment and help solve a major problem in
conducting clinical trials.