The Duke-UNC Comprehensive Sickle CelLCenter remains committed to helping translate scientific findings on diagnosis and treatment into improved diagnostic services, treatment, and quality of life for patientswith sickle cell disease - both those for whom the Center provides clinical care and all sickle cell patients in North Carolina. The Center's Patient Service Core offers the following patient-support activities: (1) Education - The Center is the primary North Carolina state resource for educating health care practitioners via guidelines, quarterly CME newsletters, clinical management videos, and conferences at community hospitals and medical society meetings. The Center promotes awareness of sickle cell disease among lay audiences by conducting educational programs for health and human service professionals, in public schools and colleges, in civic and community organizations, and at health fairs. The educational programs are augmented by the printed materials produced by the Center and shared with local community programs. Further through our Clinical Core activities, we offer patient and family individual and group education sessionsas well as sponsor and facilitate support groups. (2) Community Outreach - The Center has developed liaison activities through the North Carolina Sickle Cell Syndrome Program and participates directly in three outreach community clinics and interactively with the statewide Lay Volunteer Program. Another continuing project is the outreach to the Bridges Pointe Foundation which will provide assisted living and adult day center for young persons disabled by sickle cell disease and provides a prototype for other communities and states. (3) Counseling - In addition to providing scientific updates to the counseling efforts of the NC Sickle Cell Syndrome Program and community-based programs, the Patient Service Core provides direct counseling to persons within the Center's geographic and referral base who have been screened and found to have sickle cell disease and to pregnant patients and their spouses whose child is at risk for sickle cell disease. (4) Diagnostic Testing - Both of the Duke-UNC Comprehensive Sickle Cell Center's participating institutions provide laboratory facilities where accurate diagnosis of hemoglobinopathies, including hemoglobin genotyping, is performed. The professional staff of our Patient Service Core is fully integrated through the Internal Advisory Committee with the investigators and clinicians who are highlighted in other cores. These ongoing research-to-practice collaborations help us continuously re-define our concepts of excellence in patient services. In addition, the Center is able to impact understanding and practice of sickle cell disease diagnosis and management across North Carolina through its effective partnerships with state-wide organizations including:The North Carolina Sickle Cell Consortium, the North Carolina Sickle Cell Syndrome Program, the NC Governor's Council, insurers, and professional societies.
Showing the most recent 10 out of 28 publications