South Carolina Rare Conditions Project

The Centers for Disease Control and Prevention (CDC)-funded South Carolina Study of Adolescents and Young Adults with Rare Conditions grant will utilize administrative data that are managed by the Office for Research and Statistics (ORS) at the South Carolina Budget and Control Board and the SC Disability Cube, created by the Study Team with colleagues at the ORS, to better learn and document the health challenges faced by adolescents and young adults with Fragile X syndrome, muscular dystrophies, and spina bifida. The project will focus on linkage of administrative datasets to describe the prevalence and service use of persons with these three conditions. The study will include longitudinal data from the time the individual was diagnosed through age 24 years, and estimates of the prevalence and service use will be calculated for 2000, 2005 and 2010.

The Co-Principal Investigators are Suzanne McDermott, Ph.D., a health services researcher and epidemiologist, and Joshua Mann, M.D., MPH, a preventive medicine physician and epidemiologist. McDermott is the Principal Investigator for the South Carolina CDC-funded Disability and Health Project and has served in this capacity since 1991. The PIs have expertise in secondary data analysis and statistical modeling.

The South Carolina project is a collaboration between a state university and state government. In addition, the Project Team has a strong relationship with the advocacy community, professionals representing biostatistics and economics, and a partnership with the national organization, the American Association on Health and Disability (AAHD). The project staff will work closely with partners at the AAHD on the identification of other states with capacity to link administrative data and the dissemination of results.