Content and Context of a Research Registry for Community-Based Research

Abstract

There is a dearth of evidence relative to the identification and the variability between the prevalence of chronic conditions in the greater geographic community and the prevalence of these chronic conditions reported through community-based primary care practices. Described is the content and context of a research registry and the variation in panels given the means of recruitment. Patients complete a medical form that includes their self-reported demographics, current and past medical conditions, current medications, family history of selected medical conditions, and a release for full access to their medical records. Two panels were examined, those patients served by community-based primary care practices and assessment of those citizens living in the greater underserved population. These results suggest that the recorded frequency of conditions is similar to those found in the most frequent diagnostic clusters reported in literature for primary care visits. Despite the equity of the demographic and geographical area for recruitment, the identified chronic conditions of those recruited from medical practices differed significantly than the participants from community venues. These findings are provocative in that they have an impact on the understanding of the content and context of a primary care community-based research registry, but also the possible variations in panels given the means of recruitment into a registry. These data are relevant not only as a measure of prevalence of conditions seen in primary care, but perhaps more importantly as a measure of the prevention of chronic diseases that disproportionately affect the underserved.