Prevention of Complications of Thalassemia

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ABSTRACT: The model New York Presbyterian Hospital-Weill Medical College of Cornell University (NYPH-WMC) Thalassemia Center is the largest program in the New York area for the care of over 100 thalassemia patients and their families which aims to promote health and improve the quality of life of thalassemia patients. Specifically, the NYPH-WMC aims to provide comprehensive medical, psychosocial and genetic services. A multidisciplinary on-site diagnostic, treatment and support team comprised of the director, a pediatric hematologist, pediatric and adult hepatologists, endocrinologists, cardiologists, radiologist, biochemist, geneticist, social worker and psychologist, genetic counselor, nurse practitioner, and study and outreach coordinators delivers comprehensive preventive services and participates in clinical and basic research to advance the understanding of thalassemia and improve management. Regular transfusions are administered at bi-monthly visits, monthly chemistries, quarterly evaluations and annual assessments including hepatic, endocrine and cardiac evaluations, hearing and eye exams are performed with surveillance and monitoring of clinical outcomes. Consultative comprehensive healthcare services are provided to the local and regional community of thalassemia patients and healthcare providers. Culturally competent screening, genetic counseling and prenatal diagnosis are also provided on-site and in outreach programs to identify those who can benefit from education, treatment and prevention services as well as to assess the needs of the underserved. Collaborations with local and national consumer organizations are maintained with the Thalassemia Action Group (TAG), the Cooley's Anemia Foundation (CAF) and local healthcare providers at smaller non-federally funded regional institutions which care for fewer thalassemia patients. Annual patient/parent educational conferences are conducted and annual medical update symposiums are held for healthcare providers. Comprehensive healthcare services are directed at attaining and measuring specific outcomes to prevent and reduce complications of transfusional iron overload implementing the CDC's Thalassemia Universal Data Collection Surveillance Program for the investigation of seroconversion suspected, blood borne agents and possible bacterial contamination along with other data collection and surveillance efforts. NARRATIVE: The overall purpose of the NYPH-WMC Thalassemia Center's partnership with the CDC is aimed at promoting the health and improving the quality of life of patients with thalassemia by providing a prevention evaluation network to monitor blood safety and the delivery of comprehensive healthcare services to monitor and prevent the complications of transfusional iron overload, and to conduct research to enhance prevention and implement preventive strategies that will advocate and contribute to the development of public health policies.