Description of your demographics required for all protocols:
While the vast majority of residents in Rochester, Minnesota and surrounding communities are Caucasian, population demographics have changed over the past decade. [According to census area data such cultural groups as the Somalis, Hispanic/Latinos, and South East Asians have increased the percentage of minorities living in Olmsted County from 3% in 1990 to nearly 10% in 2000. Despite the increases in the number of minorities within Rochester, Minnesota it is probable that recruitment will fall short in the area of minority participations.]
Ethnic/Racial baseline from previous research:
[In light of studies demonstrating predominance of idiopathic DCM in Blacks in the United States [Am J of Epidemiology (1990); 131(1):48-56], the Rochester Somali population represents a unique opportunity to study genetic risk factors for idiopathic DCM among Black African individuals who have recently emigrated to the United States. Studies also indicate that Black Africans may be at an increased risk for idiopathic DCM [S. Afric Med J (1990); 77(4) 190-193], however, many African studies are inconclusive in their findings.]
Recruitment strategies and collaborations: (Attempt to document work with community agencies, elders, cultural advisors, translated materials, and multidisciplinary research teams. It is important to acknowledge community literacy and language abilities when addressing outreach and recruitment.)
[Most of our study subjects are recruited once a clinical diagnosis of DCM is made and our current research budget precludes large scale, population-based screening for presymptomatic DCM. Consequently, our primary strategy will be to work with cardiologists and nurses staffing the outpatient Mayo Heart Failure Clinic, the Echocardiography laboratory, and the inpatient Heart Failure Service at St. Mary's Hospital to identify and recruit minority subjects. My clinical study coordinator and language interpreters will facilitate these efforts. We anticipate recruitment of approximately 50 minority subjects over the 3-year tenure of our research proposal, increasing minority representation to 20% when added to our current study cohort. The advantage of local study subjects over BEST study subjects is our ability to extend clinical and genetic investigations to the consenting family members of probands.]
Institutional capacity and support:
[Our plans for encouraging minority participation include working with the Office of Diversity in Clinical Research to develop community-based strategies for recruitment. Research teams and the ODCR staff work in collaboration with elders chosen by community members. Working with multiple community agencies, community members are connected with, and referred to, community sites to improve access and empowerment. Lead interpreters/cultural brokers are utilized for outreach planning and activities. Currently a pilot project has been created in which the Minority Outreach Specialist, a lead Study Coordinator, lead primary investigator, and a lead interpreter/cultural broker, follow a study from the time of the design, the outreach, participatory phases, and evaluation, to assist in the description of cultural context related to care, health, and healing outcomes. In addition, these outcomes will be shared with the clinical research roundtable throughout the year, to promote best practice and cultural competency within clinical research at Mayo. Through new initiatives within this office and through local community and local clinical investigator support we anticipate increasing participation of persons of color in this type of research.]
