Integrated hemophilia patient care via a national network of care centers in the United States: A model for rare coagulation disorders

Leonard A. Valentino, Judith R. Baker, Regina Butler, Miguel Escobar, Neil Frick, Susan Karp, Kollet Koulianos, Susan Lattimore, Diane Nugent, Joseph N. Pugliese, Michael Recht, Mark T. Reding, Michelle Rice, Constance B. Thibodeaux, Mark Skinner

Research output: Contribution to journalArticlepeer-review

16 Scopus citations


Rare, chronic diseases such as hemophilia and other congenital coagulation disorders require coordinated delivery of services for optimal outcomes. Hemophilia Treatment Centers (HTCs) are specialized, multidisciplinary health-care centers providing team-based care to meet the physical, psychosocial, and emotional needs of people with hemophilia (PWH) and may serve as a model for other rare coagulation disorders. Health-care purchasers, as well as the general medical community, may not appreciate the breadth and quality of services provided by HTCs. They exemplify the acculturalization and actua-lization of integrated care by providing comprehensive diagnostic and treatment services that reduce morbidity, mortality, avoidable emergency room visits, hospitalizations, and overall costs, while promoting a longer lifespan and improved patient functioning and outcomes. This is accomplished by a team-based approach relying upon a shared decision-making model to effectively prevent complications and manage symptoms in PWH, who are depen-dent on high-cost treatments. This article provides a concise yet comprehensive description of the core components of an HTC and the regional and national networks in the United States, which together achieve their incomparable value for all stakeholders.

Original languageEnglish (US)
Pages (from-to)897-911
Number of pages15
JournalJournal of Blood Medicine
StatePublished - 2021


  • Coagulation disorders
  • Health-care delivery network
  • Hemophilia
  • Integrated care
  • Multidisciplinary
  • Patient-centered care

ASJC Scopus subject areas

  • Hematology


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