Organisations are planning to develop new clinical practice guidelines for the diagnosis and management of von Willebrand disease. The original article can be read here, at PR Newswire (whose source was the American Society of Hematology).
About Von Willebrand Disease
Von Willebrand disease (VWD) is an inherited condition that can cause heavy bleeding. It is named after a blood clotting protein called von Willebrand factor that binds to other proteins and cells in the blood to form blood clots. People with VWD have low levels or poorly functioning forms of the von Willebrand factor, and, as a result, are less able to form blood clots and more likely to have prolonged bleeding.
People with VWD may experience symptoms such as bruising easily, frequent nosebleeds, long-lasting bleeding from cuts, bleeding gums, and heavy periods. However, many patients with the condition wait a long time for a diagnosis and may remain undiagnosed until a severe bleeding episode that would have been preventable if they had been aware of their condition. Better clinical guidelines on how to diagnose and manage VWD are hoped to prevent that kind of situation.
About the Planned Guidelines
The American Society of Hematology, the National Hemophilia Foundation, World Federation of Hemophilia, the International Society on Thrombosis and Haemostasis, and the University of Kansas Medical Center are planning to work together to develop the new guidelines.
The aim of the project is to create and maintain up-to-date recommendations regarding the diagnosis and management of VWD. Recommendations will be developed by two expert panels of over twenty people, including haematologists, scientists, and patients with VWD. The panel is planning to come up with questions that consider issues such as how varied different aspects of clinical practise are, how often certain questions come up in practise, whether existing guidelines that answer these questions are available, and what resources can be used. The overall focus will be on improving patient healthcare and outcomes.
Following this step, the available evidence will be reviewed and used as the basis for clinical practise recommendations by the panels. The public will then have an opportunity to comment on the recommendations, before they are published as guidelines around the expected date of 2020.