Abstract
Purpose :
The Primary Open-Angle African-American Glaucoma Genetics study cohort is the largest African American primary open-angle glaucoma (POAG) population prospectively recruited at a single institution (University of Pennsylvania, Department of Ophthalmology and research affiliates) to date. We instituted a multi-pronged enrollment approach that helped to recruit high numbers of African American patients from the Philadelphia region.
Methods :
The POAAGG study is a 5-year project designed to elucidate the genetic architecture and co-morbidities associated with POAG in African Americans. From 2010-2013, two Clinical Research Coordinators enrolled patients at three sites at UPenn (Scheie Eye Institute, Perelman Center for Advanced Medicine, Mercy Fitzgerald Hospital). After funding in March 2014, nine Clinical Research Coordinators were hired and enrollment efforts expanded to two additional sites (the Lewis Katz School of Medicine at Temple University and a private practice in West Philadelphia (Windell Murphy, MD)). These Clinical Research Coordinators were recruited from post-baccalaureate programs at the University of Pennsylvania, Bryn Mawr College, and other local Universities. Additional subjects were recruited via the Penn Medicine Biobank (PMBB). Subjects were also recruited from outreach events at health fairs, churches, and senior living facilities, as well as from “in-reach” screening events of self-referred patients from study publicity on public transportation, African American radio and newspapers, church ministers, and government officials.
Results :
Between 2010 and March 2014, 1417 patients were enrolled in the POAAGG study (30 subjects per month on average). From March 2014 to December 2015, 4962 additional patients have been enrolled to POAAGG (236 subjects per month). Total counts include 6379 patients, with 1985 cases, 3542 controls (1933 from POAAGG and 1609 from the PMBB), and 852 suspects. A total of 185 patients presented to outreach screening events and 41 patients presented to in-reach events.
Conclusions :
A multi-pronged enrollment approach, including recruitment at additional research sites, successful enrollment by well-trained Clinical Research Coordinators, utilization of the PMBB, and implementation of outreach and in-reach screenings contributed to a large enrollment boost for the POAAGG study.
This is an abstract that was submitted for the 2016 ARVO Annual Meeting, held in Seattle, Wash., May 1-5, 2016.