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• W2201460018 abstract "he authors of the papers in this supplement to the American Journal of Preventive Medicine 1-15 pro- vide dramatic evidence of the broad impact of nonmalignant hematologic diseases. They explore clini- cal, research, and public health strategies to improve the outcomes and reduce the societal impact of these dis- eases. Examples include enhanced access to clinical ser- vices for affected individuals, strategies to better define the impact of these diseases on U.S. public health, and investigative initiatives to understand the biology of these diseases and develop better therapies. Improving the outlook for people with blood diseases requires concerted cooperative efforts by many individu- als and entities. Government agencies are uniquely posi- tioned to provide surveillance; establish and ensure clin- ical care access; sponsor basic, translational, and clinical research; and address health disparities. Other key con- tributors include professional hematologic societies, pri- vate foundations with broad or narrow disease foci, and in particular, community-based organizations that can speak on behalf of individuals with blood diseases. None of these entities can achieve the desired health goal for an individual or for all people with blood diseases without the willing participation of patients and their families. The papers in this supplement describe ongoing efforts emerging from collaboration among stakeholders. The Registry and Surveillance in Hemoglobinopathies (RuSH) represents a combined effort among the CDC; the National Heart, Lung, and Blood Institute of the NIH; and the Health Resources and Services Administration, which is responsible for coordinating state newborn he- moglobinopathy screening programs. The aim of RuSH is to improve the lives of individuals with hemoglobinopa- thies by creating a surveillance program to identify Americans with any hemoglobinopathy. Subjects identi- fied by this surveillance effort, done in cooperation with state health departments, will be offered the opportunity to participate in a prospective, confidential registry that will become a longitudinal database for public health monitoring. Eligible individuals will be offered participa- tion in NIH-funded clinical trials. Financial and other forms of support for this public health initiative will be sought from the patient community and the individual state health departments. This shared vision for a public health initiative focused on a rare blood disease recapitulates public health surveil- lance strategies used for other diseases. It will assess the adequacy of access to chronic care for individual patients. Enhanced opportunity to participate in scientifically peer-reviewed research will contribute to new knowledge about hemoglobinopathies and better therapies. People with nonmalignant hematologic diseases in the U.S. have rarely been among the first to benefit from public health initiatives. Hemoglobinopathies affect fewer than 200,000 people in the U.S. Even such highly prevalent and morbid acquired diseases as deep venous thromboembolism have been neglected: Preventive strat- egies have been introduced relatively late despite the ex- tensive morbidity and mortality. A concerted emphasis on blood diseases is needed for both common and rare diseases. This compendium is a substantial step toward creation of the essential evidence base." @default.
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• W2201460018 date "2010-04-01" @default.
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• W2201460018 title "The Registry and Surveillance in Hemoglobinopathies" @default.
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• W2201460018 doi "https://doi.org/10.1016/j.amepre.2010.01.005" @default.
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