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CDC Webinar: Evidence-Based Guideline on Hemophilia Care

Evidence-Based Guideline on Hemophilia Care: A Model for Rare Disease Guidelines


  • Mark Skinner JD, National Hemophilia Foundation, President & CEO Institute for Policy Advancement Ltd.
  • Menaka Pai BSc, MSc, MD, FRCPC, Assistant Professor, Department of Medicine, Associate Member, Department of Pathology and Molecular Medicine, Consultant Laboratory Hematologist,, Hamilton Regional Laboratory, Medicine Program, McMaster University
  • Steven Pipe MD, Chair, Medical and Scientific Advisory Council,, National Hemophilia Foundation, Director, Division of Pediatric Hematology and Oncology, Pediatric Medical Director, Hemophilia and Coagulation, Disorders Program, Director, Special Coagulation Laboratory, University of Michigan

The optimal care delivery model for people with hemophilia is integrated care. This approach requires a high degree of collaboration and communication by all healthcare team members to establish a comprehensive treatment plan, and is supported by a number of national and international guidance documents. However, the effects of integrated care on patient outcomes have not been studied thoroughly. The National Hemophilia Foundation (NHF) initiated the development of an evidence-based clinical practice guideline to identify best practices in delivery of care for people with hemophilia in order to improve patient outcomes. In this webinar, presenters will describe the research that formed the basis for the guideline, and how the guideline will be put into action, including:

  • The main findings of the study;
  • How these findings were used to develop the guideline;
  • The clinical implications of the guideline; and
  • How this guideline will be used in the U.S. Hemophilia Treatment Center network to improve care for people with hemophilia.

NHF partnered with McMaster University to ensure that the methods used to develop the guideline adhered to the highest principles in evidence review. This guideline meets the standards of the National Guideline Clearinghouse and the Institute of Medicine. It has been endorsed by the World Federation of Hemophilia, the American Society of Hematology, and the International Society on Thrombosis and Haemostasis.

Learning Objectives: At the end of the presentation, the participants will be able to

  1. Describe how the integrated care model impacts patient care, and how patients can use the guideline as a tool to talk with healthcare providers.
  2. Identify ways payers and insurers, hospitals and healthcare systems, federal and state programs, policymakers, and others can use the guideline as a resource to improve quality of care.
  3. Describe how healthcare professionals and researchers can use the guideline as a resource to improve care for people with hemophilia and other rare diseases.


This webinar is free and open to public health professionals, clinicians, and researchers who desire more information about hemophilia and blood disorders. Advance registration is required and the number of attendees is limited.