CORE--PEDIATRIC SICKLE CELL PROGRAM

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The pediatric clinical core provides comprehensive care for 235 children, teenagers, and young adults with sickle cell disease (SCD) in 222 families . The pediatric clinical care component of patient services is a system of high quality, readily available medical and psychosocial care that responds to the patient's needs. Our multidisciplinary approach integrates the skills of medical subspecialists, social workers, counselors, psychologists, and nurses to meet the patient's and family's needs. The majority of the patients in this program are born in the Greater Cincinnati area and are identified by newborn screening. The Cincinnati Comprehensive Sickle Cell Center (CCSCC) continues to take a leadership role in insuring appropriate and timely follow-up for infants born in this area. No baby in the Cincinnati area who was identified by newborn screening as having a sickle hemoglobinopathy has been lost to follow-up. The clinical care component works effectively with the primary care provider to coordinate care with a minimum of redundancy and maximum of benefits. The clinical care component emphasizes a smooth transition into adult care and addresses problems of education, vocational, and psychosocial aspects of this chronic disease. The clinical care component also serves to promote both clinical and basis research that may benefit patients with SCD. The specific aims of the Pediatric Clinical Core are 1) to provide comprehensive care to patients and families of patients enrolled in the pediatric clinic; 2) to adapt the traditional concept of comprehensive care to the present day reality of managed care by which patient enrolled in various managed health care plans continue to receive the benefits of a comprehensive program; 3) to provide training opportunities for residents, fellows, medical students, nursing students genetic counseling students, as well as other health care professionals; 4) to develop a transition clinic for adolescent patients as part of a transition program the goals of which are to help adolescents make a successful transition to an adult comprehensive care program; and 5) to maintain a stable resource of patients for the clinical and basic science research activities, and to provide clinical data for those projects.