Increasing minority participant enrollment into a cancer family registry: the Cancer Genetics Network.

Abstract

design and implement studies at each site to test the usefulness of new recruitment strategies, processes, or incentives. A published paper came out of this initial effort to review the literature on this topic [2] , as well as a series of ideas and processes to test within the CGN sites. The research team formed working groups, based on scientific expertise located at each center, populations existing in the catchment area of each site, and interest in participating in an effort in minority recruitment. Each of the working groups focused on a package of a different ethnic minority population and a different strategy. The centers at Duke and Georgetown Universities conducted a randomized trial of a recruitment brochure in which the content for potential African American enrollees to the CGN was targeted and enhanced based on formative research with the targeted population. Investigators at the University of Pennsylvania tested the offering of personal risk feedback as an incentive to join CGN, adding questions to the standard CGN survey to capture reactions to the feedback. Efforts at Johns Hopkins focused on working with African American sororities as community contacts to enhance enrollment into the network. The group at the University of Texas conducted a randomized trial to test the effects of a targeted print media product, a magazine, to enhance recruitment of Hispanic participants into the CGN. The collaborative study conducted by investigators at both the University of California Irvine and the Fred Hutchinson Cancer Research Center In 1998, the National Cancer Institute funded an innovative national Cancer Genetics Network (CGN) which provides participating researchers access to a breadth of research data not currently available to most individual cancer genetics programs. The CGN is composed of eight centers around the nation which are linked to a central informatics center. The Network supports collaborations to investigate the genetic basis of cancer susceptibility, explore mechanisms to integrate this new knowledge into medical practice, and identify ways to address associated psychosocial, ethical, legal, and public health issues [1] . As of May 2002, the CGN contained data on 15,007 participants and 241,948 family members. The majority of CGN participants were of Non-Hispanic White/Caucasian ethnicity (90%), with few numbers of Hispanic (4%), Black (3%), Asian (1%), and other ethnicities (2%). These participation figures did not match those of the general public, nor did they match the catchment areas of the participating sites in the CGN. The investigators and NIH staff reviewed the disparities in recruitment yield 4 years after the registry funding period began, and decided to take action to improve recruitment of minority participants. The investigators decided to conduct research into minority recruitment, focusing on ways to enhance ethnic minority participation into the registry. The sites were charged with two goals: to identify new recruitment sources appropriate to the locale and eligibility requirements of each site, and/or to