CLINICAL SERVICES

The Duke University Comprehensive Sickle Cell Center is committed to providing the best possible care to patients with sickle cell disease and to finding ways to improve that care. Both in-patient and out-patient care is provided. Medical, surgical, rehabilitative, psychosocial and educational services are provided. The service capacity of the sickle cell center is enhanced through referrals to the vast resources of Duke University Medical Center and the community. Duke University Medical Center has on its staff a number of specialists, such as obstetricians, neurologists, and orthopedic surgeons, who are skilled in working with patients with sickle cell disease. In addition, we offer advanced services for safe blood transfusion and exchange transfusion of patients with sickle cell disease when such services are required.

EDUCATION

Education services are designed to: enable persons with sickle cell disease and their families to be active and informed participants in the patients’ overall health care; Ý educate individuals so they can make informed and voluntary decisions concerning sickle cell screening; disseminate information to health care providers so they can better care for and counsel individuals concerning sickle cell disease and trait; and assure that effective and up-to-date education and outreach services are available for the public. A variety of educational methods and formats are used during clinic visits. The Center provides workshops, training programs, lectures, discussion groups, and information booths at health fairs. The Center staff will also visit classrooms, health care facilities, industries, places of worship, and homes on request. The Center also serves as a resource for written information on sickle cell disease and encourages requests for presentations or assistance in planning and carrying out educational programs.

RESEARCH

Duke University Medical Center has, since its founding, established a tradition of research to improve the health of North Carolinians, as well as individuals worldwide. Today, this tradition extends to sickle cell disease, a disease found most often in peoples of African or Arabian descent. The Comprehensive Sickle Cell Center is engaged in basic, clinical, community health, educational and psychosocial research on the myriad problems encountered by patients with sickle cell disease.

SCREENING AND TESTING

Testing of all newborns for the presence of hemoglobin S and other abnormal hemoglobins is mandated by the state of North Carolina. At Duke, this testing program is coupled with education and follow-up as part of the Center’s comprehensive services. We also provide testing for the prenatal diagnosis of sickle cell disease, as well as testing for the ability of individuals to pass sickle cell disease and other blood disorders to their children.
Detection of sickle cell disease in infants, before the onset of clinical symptoms, allows the parents of the affected children to be educated and counseled concerning the nature of the disease, its symptoms, and factors associated with infant mortality. In addition, the child’s physician can be informed of the child’s special health needs and, if necessary, educated about current recommended medical practices applicable to infants with sickle cell disease. Education of both parents and physicians can reduce infant mortality from sickle cell disease.

PSYCHOSOCIAL SERVICES

The Center staff recognizes the need for comprehensive support for patients and their families. Staff members work to address the total needs of patients and their families through direct interventions and/or referrals. Provisions are made to assist patients and their families in identifying, assessing, and acting on a broad spectrum of issues affecting the patients’ total wellbeing. Social, environmental, economic and personal issues can be addressed according to the wishes of patients and families. As a part of this process, patients and family members are taught to make use of community resources that exist to meet their individual needs.

DAY PROGRAM

A day program is being designed to provide patients with a better understanding of the treatments available, including medical and non medical interventions for better health. For more information please contact Elaine Whitworth at (919) 684-6464.

COMMUNITY PROGRAMS

To serve patients and their families living in outlying counties, the Duke University Comprehensive Sickle Cell Center has established formal cooperative ties with two community sickle cell programs and also works closely with the educator-counselors of the NC Sickle Cell Syndrome Program. The staffs of the community-based centers, as well as the staff of the state program, are involved in community, patient and provider education; screening; counseling persons identified as having sickle cell disease, sickle cell trait or a variant hemoglobin disorder; and comprehensive patient support services (e.g., patient follow-up and referrals, some transportation and financial assistance).