Hemophilia Guidelines for All: A new ambition of the World Federation of Hemophilia (WFH)
MONTREAL, Aug. 4, 2020 /PRNewswire/ — Led by content leads, Alok Srivastava, MD, and Glenn Pierce, MD, PhD, WFH Vice-President, Medical, this 3rd edition of the World Federation of Hemophilia (WFH) Guidelines for the Management of Hemophilia offers up-to-date guidance and practical recommendations on the diagnosis and management of hemophilia, including the management of musculoskeletal complications and inhibitors, updates to laboratory diagnosis and genetic assessments, as well as new recommendations on outcome assessments.
Informed by the best available evidence and supplemented with expert opinion and patient preference, the more than 300 practical recommendations in these guidelines were developed by consensus using the “Trustworthy Consensus-Based Statement” process to ensure reliable guidance. The guideline panel was composed of clinically and geographically diverse experts in hemophilia care, as well as 25% membership of people with hemophilia and caregivers.
These high-quality, evidence- and expert-informed treatment guidelines offer a means to bridge the gap between treatment practices and care around the world. They offer a set of practical recommendations intended to improve the quality of care globally, promote effective clinical interventions and decrease variations in clinical practice. Where recommendations lack adequate evidence, these guidelines can stimulate appropriate studies.
The World Federation of Hemophilia sincerely thanks the > 100 contributors who made the development of these guidelines possible—all under very tight timelines. A special thank you to the hemophilia care experts, people with hemophilia and reviewers who generously gave their time and expertise in order to ensure that each chapter attained the highest quality standards possible. As a result of their generosity, we are able to provide health care providers and people with hemophilia around the world with a set of invaluable recommendations on which to base their care. Thank you also to the external reviewers and Haemophilia journal peer reviewers who provided feedback under the very special current circumstances of the COVID-19 crisis.
To download The WFH Guidelines for the Management of Hemophilia, 3rd edition, please visit the following link: https://onlinelibrary.wiley.com/doi/10.1111/hae.14046
Thank you to our expert panelists who contributed to the development of The WFH Guidelines for the Management of Hemophilia, 3rd edition:
Srivastava A, Santagostino E, Dougall A, Kitchen S, Sutherland M, Pipe S.W, Carcao M.D, Mahlangu J, Ragni M.V, Windyga J, Llinás A, Goddard N.J, Mohan, R, Poonnoose P.M, Feldman B.M, Lewis S.Z, van den Berg H.M, Pierce G.F on behalf of the WFH Guidelines for the Management of Hemophilia panelists and co-authors*
*Abdelaziz Al Sharif, Manuel A. Baarslag, Lisa Bagley, Erik Berntorp, Greig Blamey, Mark Brooker, Francisco de Paula Careta, Kim Chew, Donna Coffin, Carlos D. De Brasi, Piet de Kleijn, Gerard Dolan, Vincent Dumez, Gaetan Duport, Carmen Escuriola Ettingshausen, Melanie M. Golob, Emna Gouider, Lucy T. Henry, Debbie Hum, Mathieu Jackson, Radoslaw Kaczmarek, Kate Khair, Barbara A. Konkle, Rolf C. R. Ljung, Silmara A. de Lima Montalvão, Augustas Nedzinskas, Sonia O’Hara, Margareth C. Ozelo, Gianluigi Pasta, David Enrique Preza Hernández, Bradley Rayner, Fiona Robinson, R. Sathyanarayanan, Thomas J. Schofield, Andrew Selvaggi, Shrimati Shetty, Maura Sostack, Alison Street, Ekawat Suwantaroj, Claude Tayou Tagny, Pierre Toulon.
About hemophilia and other bleeding disorders
Hemophilia, von Willebrand disease, inherited platelet disorders, and other factor deficiencies are lifelong bleeding disorders that prevent blood from clotting properly. People with bleeding disorders do not have enough of a particular clotting factor, a protein in blood that controls bleeding, or else it does not work properly. The severity of a person’s bleeding disorder usually depends on the amount of clotting factor that is missing or not functioning. People with hemophilia can experience uncontrolled bleeding that can result from a seemingly minor injury. Bleeding into joints and muscles causes severe pain and disability while bleeding into major organs, such as the brain, can cause death.
About the World Federation of Hemophilia
For over 50 years, the World Federation of Hemophilia (WFH)—an international not-for-profit organization— has worked to improve the lives of people with hemophilia and other inherited bleeding disorders. Established in 1963, it is a global network of patient organizations in 140 countries and has official recognition from the World Health Organization.
WFH support for the bleeding disorders community is provided by many endeavours which are making a difference in the community today, including:
- WFH programs which are carried out in collaboration with national member organizations (NMOs) and a dedicated group of medical and lay volunteers, and are based on a comprehensive development model that aims to achieve sustainable comprehensive care and “Treatment for All”.
- The WFH Humanitarian Aid Program which provides a range of integrated care development training programs to ensure the local infrastructure and medical expertise in developed countries are able to use donated products in the most optimal way possible.
- The Global Alliance for Progress (GAP) Program is the WFH flagship development program aimed at closing the gap in treatment between developed and developing countries in three key areas: the number of people born with hemophilia and those who reach adulthood; the estimated and actual number of people known with bleeding disorders; and the need versus the availability of treatment products.
- WFH World Bleeding Disorders Registry (WBDR), which uses data collection to advance the understanding and care of people with hemophilia worldwide. An accessible patient registry strengthens our capacity to identify, diagnose, treat, and care for people living with hemophilia and other rare inherited bleeding disorders.
- The WFH Annual Global Survey which collects basic demographic information and data on access to care and treatment products in order to provide hemophilia organizations, hemophilia treatment centres and health officials with useful information to support efforts to improve or sustain the care of people with bleeding disorders.
- The WFH eLearning Platform which features hundreds of important educational resources for users with both medical and non-medical backgrounds—in multiple languages—including guides, fact sheets, videos, articles, games, and interactive modules that are downloadable for free, and are well-suited for any learning style or area of interest.
To find out more about the WFH, please visit www.wfh.org.
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