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Patient Organization Initiates Practice Guidelines on Hemophilia Care

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The National Hemophilia Foundation (NHF) with the guidance of its Medical and Scientific Advisory Council (MASAC), today announced that it is initiating a multi-year project to develop evidence-based clinical practice guidelines (CPGs) to ensure that patients with hemophilia in the United States and elsewhere receive high quality care.

New York, NY (PRWEB) June 26, 2014

The National Hemophilia Foundation(NHF) with the guidance of its Medical and Scientific Advisory Council (MASAC), today announced that it is initiating a multi-year project to develop evidence-based clinical practice guidelines (CPGs) to ensure that patients with hemophilia in the United States and elsewhere receive high quality care. With ongoing changes in the healthcare environment, an NHF and MASAC working group determined that the first guideline would focus on evaluating care models for hemophilia management, including the comprehensive care model of the hemophilia treatment centers (HTCs).

NHF is partnering with McMaster University, which has an international reputation for its work in CPG development, for the guideline on care models. Drs. Holger Schünemann and Alfonso Iorio of the Department of Clinical Epidemiology and Biostatics at McMaster University will be serving as co-principal investigators for the project.

NHF and MASAC have long been engaged in advancing the standard of clinical care and issuing treatment recommendations for all bleeding disorders, stated Val D. Bias, Chief Executive Officer of the National Hemophilia Foundation. In 2012, NHF held a strategic summit to assess the US health care environment and develop a plan to assure that individuals with hemophilia and other bleeding disorders have access to high quality care. The Summit report included a call for NHF to sponsor the production and maintenance of evidence-based clinical practice guidelines to be included in the National Guidelines Clearinghouse (NGC). Acceptance of a guideline in the NGC is critical to broad adoption of the guidelines by insurers.

The first guideline panel meeting was held on June 21st, during the 60th annual meeting of the International Society on Thrombosis and Haemostasis Scientific and Standardization Committee in Milwaukee, WI. The guideline project on models of hemophilia care should be completed by the end of 2015.

About the National Hemophilia Foundation: The National Hemophilia Foundation (NHF) is dedicated to finding better treatments and cures for inheritable bleeding disorders and to preventing the complications of these disorders through education, advocacy and research. Established in 1948, NHF is based in New York City with 52 chapters throughout the United States. NHFs programs, initiatives and events are made possible through the generosity of individuals, corporations and foundations as well as through a cooperative agreement with the Centers for Disease Control and Prevention (CDC).

About McMaster University: McMaster University, located in Hamilton, Ontario, Canada, is one of the Top 100 universities in the world (Shanghai Jiao Tong University Academic Ranking of World Universities, 2012) and is the home of the McMaster Model a student-centred, problem-based, interdisciplinary approach to learning which has been adopted by universities around the world. With over 21,000 full-time undergraduate and over 3,400 graduate students, McMaster is the only North American host site of a United Nations University, the Institute for Water, Environment and Health (UNU-INWEH). The Faculty of Health Sciences at McMaster University is consistently ranked among the top 50 university faculties in the field of health sciences and the Department of Clinical Epidemiology and Biostatics (http://www.fhs.mcmaster.ca/ceb/) with over 35 full-time faculty members is widely considered the birthplace of evidence based health care and a leader in the practice and methodology of clinical practice guideline development.

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