Researchers and clinicians are innovators.

The overarching mission of HUGS is to promote quality care for people with bleeding disorders by contributing to evidence-based knowledge. We provide tools and data to enable healthcare stakeholders to advocate for better care, and promote better healthcare delivery and outcomes. The mission is achieved by (1) conducting original research to develop and evaluate hemophilia outcome research methodologies, (2) implementing high caliber research program; (3) collaborating with investigators in outcomes-based research, and (4) training graduate students and others.

The first study of HUGS was created in the early 1990’s by Chris Pitkin, a California man with severe hemophilia who became a health policy consultant and advocate. As a leader in the hemophilia community, Mr. Pitkin established a foundation to help individuals with hemophilia or other bleeding disorders, and their immediate family members. He was also instrumental in the development of HUGS, with the primary goals of providing data to support best evidence-based treatment practices and contributing new methodologies to advance health outcomes research. Since the first study was launched more than twenty years ago, many more individuals are insured by managed care companies, and new treatments are being developed every year. HUGS have been a key organization to help understand how these changes affect the cost of hemophilia care, and to identify national differences in utilization patterns.

The HUGS study data are now housed in the USC School of Pharmacy, and include utilization and treatment outcomes data on children, their caregivers and adults with hemophilia A (FVIII) and B (FIX) who receive care at Hemophilia Treatment Centers (HTCs). The HUGS HTC group includes facilities from California, Colorado, Indiana, Massachusetts, Texas, Ohio, Michigan, Washington, and Mississippi. We maintain strong collaborative relationships with the American Thrombosis & Hemostasis Network (ATHN), World Federation of Hemophilia (WFH), National Hemophilia Foundation (NHF), International Society for Pharmacoeconomics and Outcomes Research (ISPOR), Centers for Disease Control and Prevention (CDC) and various Hemophilia societies. Over last 20 years, HUGS study data have been referenced by national and international policy makers, and we provide valuable findings not only to policy makers, but also consumers, healthcare providers and payers.

Randall G. Curtis
Steering Committee Chair