Models of Care and Research in Thrombosis and Thrombophilia

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DESCRIPTION (provided by the applicant): The University of Colorado Health Sciences Center and Mountain States Regional Hemophilia and Thrombosis Center have provided comprehensive hemophilia medical and psychosocial care beginning in 1973. Using this same model of care with specialists in multiple disciplines, services to the thrombophilia and thrombosis population as well as women with bleeding began in 2001. During the first phase of funding, the infrastructure of the women's and thrombosis clinics was established with both the adult and pediatric populations. Services include diagnosis, in- and out-patient care, follow-up care, education, family outreach for diagnosis and education, community education and interaction with the patient advocacy group. This cooperative agreement will enable the program to continue to grow, develop more educational materials, expand our research efforts and provide a model for coordinated hemophilia and thrombophilia clinics nationally. The goals of this project are: 1) determine the efficacy of integrated interdisciplinary care and prevention services for persons with hemophilia, other hereditary bleeding disorders including women with bleeding disorders, and thrombophilia to reduce morbidity and mortality associated with bleeding and clotting diseases; 2) assess unmet needs for service delivery and identify outreach strategies designed to improve access to care; 3) develop effective messages aimed at disease management and prevention; and 4) foster the development of training programs to enhance provider skills for the delivery of hemostasis and thrombosis care. Data will be collected by questionnaire from participating patients to plan future prevention activities.