The U.S. Thrombosis and Hemostasis Centers pilot sites program.

Area of Science:

• Hematology
• Public Health
• Health Services Research

Background:

• Venous thromboembolism (VTE) presents significant morbidity and mortality, with care delivery often incomplete and variable.
• Existing comprehensive healthcare models for chronic disorders like hemophilia have not been fully evaluated for coagulation disorders.
• The Centers for Disease Control and Prevention (CDC) is addressing this gap by collaborating with Thrombosis and Hemostasis Centers.

Purpose of the Study:

• To determine the efficacy of integrated, multidisciplinary care and prevention services for hemostatic disorders.
• To assess unmet needs in service delivery and identify strategies to improve access to care.
• To develop effective disease management messages and foster provider training programs.

Main Methods:

• A collaboration between the CDC and eight Thrombosis and Hemostasis Centers.
• Implementation of a web-based patient registry for prospective tracking of service allocation and patient outcomes.
• Enrollment of over 2,600 patients and collection of data on more than 5,000 visits between August 2003 and March 2006.

Main Results:

• Characterization of patients receiving care and documentation of health services provided.
• Establishment of a network for data collection across multiple centers.
• Foundation laid for future collaborative clinical and epidemiologic investigations.

Conclusions:

• Integrated multidisciplinary care models show promise for improving management of thrombosis and thrombophilia.
• The established patient registry and data network are crucial for evaluating clinical outcomes and enhancing expertise.
• Further research and enhanced provider skills are essential for optimizing patient care in hemostatic disorders.