ORLANDO, Fla., July 25, 2016 /PRNewswire/ -- The National Hemophilia Foundation's (NHF) 68th Annual Meeting in Orlando was the setting for the announcement that a clinical practice guideline for care models for the management of people with hemophilia (PWH) in the United States has been accepted for inclusion in the National Guideline Clearinghouse™ (NGC). The guideline, sponsored by NHF in partnership with McMaster University, recommends an integrated care model be used over non-integrated models for people with hemophilia, as well as for those with inhibitors and at high risk for inhibitor development.
The guideline panel further recommends that a hematologist, specialized hemophilia nurse, physical therapist, social worker, and round-the-clock access to a specialized coagulation laboratory be part of the integrated care team. The guideline also has recommendations to advise NHF and the broader hemophilia community in setting research priorities to expand the evidence base of the guideline's recommendations, including further studies in: geriatric populations; populations with poor access to care; and PWH who access care outside of hemophilia treatment centers (HTCs).
The National Guideline Clearinghouse's mission is to provide physicians and other health professionals, healthcare providers, health plans, integrated delivery systems, purchasers, and others with an accessible mechanism for obtaining objective, detailed information on clinical practice guidelines and to further their dissemination, implementation and use.
The NHF-McMaster Guideline on Models of Care for Hemophilia has been endorsed by the World Federation of Hemophilia (WFH), the American Society of Hematology, and the International Society for Thrombosis and Haemostasis, and was published in the July issue of Haemophilia, the official journal of the World Federation of Hemophilia. The guideline may be accessed online at http://onlinelibrary.wiley.com/doi/10.1111/hae.2016.22.issue-S3/issuetoc.
NHF's medical advisors provide context
In a foreword to the guideline, the current and former chairs of NHF's Medical and Scientific Advisory Council (MASAC) provided perspective on its significance.
Steven W. Pipe, MD, the Laurence A. Boxer, MD, Research Professor of Pediatrics and Communicable Diseases at the University of Michigan School of Medicine, and Craig M. Kessler, MD, Professor of Medicine and Pathology and Section Chief of Hematology at Georgetown University, and a coauthor of the guideline, wrote: "The conclusion that this systemic evidence review supports is that the integrated care model, as is utilized within the US federally funded network of hemophilia treatment centers (HTCs), should be advocated for optimal care of persons with haemophilia. This guideline will provide a catalyst to promote harmonization of care delivery and reduce practice variations within the US HTC network. This guideline will inform the HTC network how best to prioritize additional 'high-value' research to fill data gaps or strengthen the evidence base as outlined in the manuscript."
"This collaborative project constitutes an important milestone on a critical component of evidence-based guideline methodology," said Alfonso Iorio, MD, PhD, FRCPC, Associate Professor, Department of Clinical Epidemiology and Biostatistics at McMaster University. "It demonstrates how a patient advocacy organization can promote and support a guideline process, in the true spirit of patient involvement in research and care process, without compromising a rigorous and transparent conflict of interest management process."
"The significance of the National Hemophilia Foundation-McMaster University Guideline on Care Models for Hemophilia Management—and its acceptance by the National Guideline Clearinghouse—cannot be overstated, beginning with the fact that it was initiated by a patient organization, NHF," said Val Bias, NHF CEO. "We are very proud the guideline was built on outcomes identified by patients as important to them, and grateful to McMaster University and guideline panel members for their tireless commitment to identifying best practices in hemophilia care delivery. We were also delighted to share the good news of NGC's acceptance of the guideline with thousands of members of the global bleeding disorders community who gathered in Orlando for our annual meeting and the WFH 2016 Congress."
NHF held its 68th Annual Meeting at the Gaylord Palms Resort and Convention Center in Orlando July 21-23, following which it is hosting the World Federation of Hemophilia's 2016 Congress (July 24-28) at the Orange County Convention Center. The WFH 2016 Congress—the largest-ever gathering of bleeding disorders experts from around the world—marks the first time the global bleeding disorders community has met in the United States in 25 years.
Hemophilia is a rare genetic disorder in which the blood doesn't clot normally because it lacks sufficient blood-clotting proteins, or clotting factors. People with hemophilia may bleed for a longer time after an injury than they would if their blood clotted normally. While small cuts are not typically a cause for concern, deep bleeding inside the body—especially in the knees, ankles and elbows—can lead to decreased mobility and disability. Further, some organ and tissue bleeds, if not treated, can be life-threatening. While there currently is no cure for hemophilia, with proper treatment and self-care, most people with hemophilia can maintain an active, productive lifestyle. Hemophilia affects 1 in 5,000 male births, with an estimated 400 babies born with hemophilia each year. It is further estimated that there are 20,000 people with hemophilia in the United States.
About the National Hemophilia Foundation
NHF (the National Hemophilia Foundation) is a 501(c)(3) nonprofit organization 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 has 53 chapters throughout the country. Our programs and initiatives 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). Additional information on NHF can be found at www.hemophilia.org.
About McMaster University
McMaster University in Hamilton, Canada is one of the world's top 100 universities. This medical-doctoral, research-intensive institution has given birth to evidence-based medicine, and established an international reputation for knowledge-translation research, health informatics, and problem-based learning.
Beth Marshall, Tel. 646.350.3598; 212.328.3746
Dennis da Costa, Tel. 914.645.7553; 212.453.2461
 Mayo Clinic, Diseases and Conditions: Hemophilia, http://www.mayoclinic.org/diseases-conditions/hemophilia/basics/definition/con-20029824. Accessed July 14, 2016.
 Centers for Disease Control and Prevention, Hemophilia Data & Statistics, https://www.cdc.gov/ncbddd/hemophilia/data.html. Accessed July 14, 2016.
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SOURCE National Hemophilia Foundation