The proposed project aims to markedly expand the resources and services provided by the New York Comprehensive Thalassemia Center (NYCTC), a well-established program that has cared for individuals with thalassemia for over 30 years through a well-established comprehensive care model delivering the most efficient transfusion, chelation and monitoring. This new application, which seeks to enhance ongoing work at the center to meet the objectives of this RFA, will focus on expanded outreach to identify thalassemia patients in the region, utilizing novel strategies and existing methods, create and disseminate toolkits and guidelines in cooperation with existing partners, and enhance the focus on provider and patient centered education for complications of thalassemia and the required monitoring to prevent them. Along with expert collaborators with whom we have collaborated in the past, we will improve our understanding and that of patients and providers of the role of infectious agents in blood transfusions and their complications. These strategic initiatives will (1) improve our overall understanding of the prevalence of thalassemia - both transfusion dependent and especially non-transfusion dependent patients, (2) increase awareness among providers and patients and families about the disease, its diagnosis, its management and its possible complications and their impact on quality of life, and (3) promote the use of evidence based consensus guidelines which have already been developed and develop other guidelines for ongoing specialized care, through dissemination to hematologists and care-givers of thalassemia patients so as to enhance expert-guided, comprehensive care to all patients with thalassemia. Our regional network will continue to include New York, New Jersey and Connecticut where we serve ~200 patients, but we will engage with patients and providers who we have followed and who have sought care at our center from states such as Florida,
Kansas and Ohio. The outreach activity of the NYCTC will extend to pediatric and adult hematologists, and primary care providers who follow patients in underserved areas, increasing awareness and creating a network of practitioners who have expert-guided, knowledge-based skills in managing the condition. A primary tool for the dissemination of information and assessment of the success of these endeavors will be the newly created NYCTC website, which provides easy access to information about thalassemia, our own program of comprehensive care, management guidelines, ongoing and upcoming clinical trials, and events. The collective impact of these strategies will form new partnerships among patients, their providers and the NYCTC, resulting in the provision of the most comprehensive, continuous care possible. We hope to increase the number of patients served to ~250.