Prevention of the Complications of Bleeding Through HTCs

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DESCRIPTION (provided by applicant): The objective of this application is to prevent complications of hemophilia by proactive implementation of prevention programs in the states of Wisconsin, Illinois, Minnesota, North Dakota, and South Dakota. The Great Lakes Hemophilia Foundation, the Regional Grantee for this five-state region, will enhance the capacity of regional centers as a public health prevention network by: 1) developing and coordinating a plan for multi-disciplinary, comprehensive prevention services for persons with bleeding disorders; (2) developing programs to identify underserved populations including minorities and women; (3) facilitating access to appropriate training and technical assistance; (4) promoting referral and access to educational and support services; (5) promoting and facilitating the exchange of information and collaboration among health care providers; (6) developing appropriate management and evaluation systems to track treatment center achievement of program plans, goals and objectives, and assess compliance with federal regulation; and (7) participating in surveillance for complications of bleeding disorders including data collection for the Universal Data Collection (UDC) and clinical research utilizing that data. The specific aims of this application include the following: 1) To expand the cohort through continued recruitment of individuals with genetic bleeding disorders; 2) To complete a transition of the database from paper to electronic and then from email to web-based; 3) To design prevention messages and strategies to share research findings; and 4) To utilize exising/expanded UDC data to address clinical issues such as these proposed by V-West: a. Joint disease progression in hemophilic patients with established hemophilic arthropathy: Evaluation of risk factors and the effect of secondary prophylaxis. b. Hemorrhagic and vascular complications of von Willebrand disease. c. An evaluation of the efficacy of a transition protocol in preparing adolescents with a bleeding disorder for self-sufficiency. It is anticipated that the proposed research will help to accelerate the adoption of healthy behaviors and that lessons leaned from this research will have application for broader populations.