WASHINGTON, January 12, 2021 / PRNewswire / – The American Society of Hematology (ASH), the International Society on Thrombosis and Haemostasis (ISTH), the National Hemophilia Foundation (NHF), and the World Hemophilia Federation (WFH) have developed complementary clinical practice guidelines on diagnosis and management of von Willebrand disease (VWD), the most common bleeding disorder in the world. The guidance was published today in Blood clots.
VWD affects about 1% of the world’s population, and is the most common inflammatory disorder. Although VWD occurs equally among men and women, women are more likely to notice the symptoms due to heavy or excessive swelling during their menstrual periods and after childbirth. This inherited condition leads to a reduced production, absence, or abnormal function of the von Willebrand clotting protein factor.
VWD can cause abnormal bleeding from minor or minor injuries, frequent runny noses, bruises, swelling in joints, and heavy menstrual periods and post-partum bleeding in women. Symptoms can vary from patient to patient or in a single patient during his or her lifetime. Primary care providers, pediatricians, obstetricians, and gynecologists who monitor for abnormal bleeding often refer their patients to a hematologist for further testing and management. Many people with mild symptoms do not get an immediate diagnosis and live for several years with untreated bleeding or do not realize they have VWD until they can get potentially hard blood. banned.
“While VWD is a common inflammatory disorder, it is also complex, presenting challenges in timely diagnosis and appropriate management of bleeding for patients,” said 2021 ASH President Martin S. Tallman, MD, of Sloan Cancer Kettering Cancer Center. “Because diagnosis is not straightforward and symptoms go deeper, reliable guidance is needed to help improve the quality of care for patients. There are no better partners for ASH in this endeavor than ISTH, NHF , and WFH, which has a common knowledge in VWD from the scientific and patient perspectives around the world, has contributed to this effort. ”
In particular, the guidelines make key statements on laboratory test thresholds to classify VWD to be more inclusive of patients suffering from bleeding, but whose blood function does not meet. to the thresholds currently accepted for diagnosis. In addition, the guideline for the first time recommends that VWD patients suffering from frequent bleeding, which reduces quality of life, should receive normal VWD prophylaxis – injectable concentration of clotting protein – several times a week. Together, the guidance on judgment and control brings together 19 recommendations.
The guide was developed by two expert panels made up of 32 people, including US-based and international hematologists, individuals living with VWD, and scientists with experience in it. the evidence synthesis and evaluation and management development method. Clinical issues were developed and prioritized by the panels, and an international study was completed to identify the most important clinical issues. There was a systematic review of the evidence available to the University of Kansas Medical Center and the panel referred to this evidence to make recommendations. This process sheds light on the lack of robust evidence on which to base recommendations, so the report calls for further research.
“These guidelines are a good example of multi-agency collaboration ensuring that the development guidance represents the most up-to-date and relevant advice on detecting and treating the disorder. This is a common, but often misunderstood, swell, “said the ISTH Vice President Claire McLintock, MD. “It was a great pleasure to work as part of the amazing team that developed the leadership in judging VWD. “
People with VWD made up about a quarter of the writing of each control panel. As full voting members they applied their knowledge to all aspects of the rigorous management development process, from prioritizing clinical issues, through assessing the available evidence, to considering factors such as stakeholder values and preferences, equality and feasibility. Their involvement, with the active support of panel chairs and collaborative bodies, was crucial in ensuring that proposals were developed with the greatest appropriateness and strong community confidence. Collaboration with WFH and NHF was critical to engaging the wider VWD patient community.
With their extensive established networks of action with healthcare professionals in centers for holistic care of inflammation problems and patient groups across the U.S. and worldwide, the four collaborative organizations, ASH, ISTH, will play an important role. NHF, and WFH in the creation and distribution of managed-based resources, and their implementation in individual care and broader advocacy efforts.
“This guidance is a vital step in our drive to address the difficulties people go through in obtaining proper, timely diagnosis and appropriate treatment. The challenge ahead is to educate both those living with VWD and recommendations-led healthcare professionals, ”he said. Leonard Valentino, MD, President and President of NHF. “We were excited to work with ASH, ISTH, and WFH to create these and bring them into the community.”
“In 2017 we gathered members of the global VWD community for the first WFH International Symposium on VWD. Representatives from countries around the world told us that it was the number one tool they needed for complete care to people with VWD as clinical practice guidelines, ”the WFH President explained Cesar Garrido. “The WFH is very proud to deliver these guidelines today, with our partners from ASH, ISTH, and NHF, to the global community. As well as offering guidance to clinicians and individuals. with VWD while involved in personal care decisions, they form the basis for important advocacy campaigns to access the recommended diagnostic methods and treatment options in all develop a country. ”
The publication of the guide will be accompanied by educational tools and resources to help patients, hematologists and other healthcare providers understand and implement the recommendations.
Links related to the new VWD guide:
About the American Society of Hematology
The American Hematology Association (www.hematology.org) is the world’s largest professional association of hematologists dedicated specifically to the understanding, diagnosis, treatment, and prevention of disorders affecting the blood. For over 60 years, the Society has been promoting the development of hematology as a subject by promoting research, patient care, education, training, and advocacy in hematology. ASH publishes Blood(www.bloodjournal.org ), the most peer-reviewed publication in the field, and Blood clots(www.bloodadvances.org), an online, peer-reviewed open access journal. For more information on ASH clinical guideline care, visit www.hematology.org/guidelines.
About the International Society of Thrombosis and Haemostasis
Founded in 1969, ISTH is the world’s leading nonprofit organization dedicated to the advancement of understanding, prevention, diagnosis and treatment of thrombotic and bleeding disorders. ISTH is an international professional membership organization with more than 7,700 clinicians, researchers and educators working together to improve the lives of patients in more than 110 countries around the world. Well-respected activities and initiatives include education and standardization programs, research activities, meetings and conferences, peer-reviewed publications, expert committees and World Thrombosis Day on 13 October. Visit ISTH online at www.isth.org.
About the National Hemophilia Foundation
NHF (National Hemophilia Foundation) is a 501 (c) (3) nonprofit organization dedicated to finding better treatments and cures for bleeding disorders and to prevent the complications of the disorders. that through education, advocacy and research. NHF programs and initiatives are made possible through the generosity of individuals, corporations and foundations, as well as through collaborative agreement with the Centers for Disease Control and Prevention (CDC). Further information on hemophilia and NHF can be found at www.hemophilia.org.
About the World Hemophilia Federation
For more than 50 years, the World Hemophilia Alliance (WFH), an international nonprofit organization, has worked to legacy the lives of people with hemophilia and other hemorrhagic disorders. Our vision of Treatment for All is that, one day, everyone with a bleeding disorder will have a more secure future no matter where they live. For decades, we have been working around the world to improve diagnosis, treatment and ensure patients have consistent access to care. We have a responsibility to deliver life-changing programs and services. Founded in 1963, the WFH is a global network of patient organizations in 147 countries and is officially recognized by the World Health Organization. Visit WFH online at www.wfh.org.
SOURCE World Hemophilia Alliance
Related Links
www.wfh.org