Patient and Healthcare Provider Roles in Clinical Trials
Participants in clinical trials and health care providers have different roles throughout the clinical trial process. It is important that both are educated and fully understand their roles. The WFH does not engage in the practice of medicine and under no circumstances recommends particular treatment for specific individuals. For diagnosis or consultation on a specific […]
Questions to Ask Before Participating in a Clinical Trial
For people considering participation in a clinical trial, it is extremely important to learn as much as possible about the clinical trial, the care expected, the cost, and the team that will be conducting the trial. It is expected that you will have questions, and essential that your questions are answered. It may be helpful […]
How New Therapies Get Tested in Clinical Trials
For a drug to become a treatment that doctors can prescribe, it must first be tested in a series of clinical trial phases, and then assessed and approved by a regulatory agency. Each clinical trial phase has a purpose, and the phases progress in order from Phase 1 to Phase 4. The WFH does not […]
WFH Gene Therapy Registry – User guide for people with hemophilia
This document is an introductory guide for people with hemophilia who wish to join the World Federation of Hemophilia (WFH) Gene Therapy Registry (GTR). It answers basic questions about the registry, its purpose, and what participants can expect. Please reach out to WFH with questions regarding participation in the registry at [email protected]. WFH Gene Therapy […]
WFH Gene Therapy Registry – User guide for hemophilia treatment centres
The World Federation of Hemophilia (WFH) Gene Therapy Registry (GTR) welcomes the participation of all Hemophilia Treatment Centres (HTCs) involved in gene therapy. This includes HTCs that administer gene therapy and those that manage or follow-up with patients who have received gene therapy at other centres. This user guide will orient HTCs to the WFH […]
WFH Gene Therapy Registry – Basics of hemophilia, gene therapy, and long-term data collection
This document is an introductory guide to the World Federation of Hemophilia (WFH) Gene Therapy Registry (GTR). It answers basic questions about the registry, its purpose, and what participants can expect. The guide is designed to help those who receive gene therapy for hemophilia and their care teams to decide if they should participate in […]
What are Inhibitors?
The previous edition of this resource is also available in: Japanese This patient handbook contains basic information about inhibitors, the most serious complication of hemophilia.
Guidelines for the Management of Hemophilia – Portuguese
The 3rd edition is available in: English, French, Spanish, Arabic, Russian The 3rd edition has also been translated into the following languages, with permission from the WFH, by NMOs/Other Organizations: Georgian, Ukrainian The 2nd edition is available in: Simplified Chinese The 2nd edition has also been translated into the following languages, with permission from the […]
Frequently Asked Questions on Women and Girls with Bleeding Disorders – German
This document is also available in: English, French, Spanish This is not an official WFH translation. This resource has been translated with permission, and is shared here with their kind permission. Translating organizations are encouraged to have translations reviewed by local experts, the WFH is not responsible for the translation or for any errors or […]
Psychosocial Resource Hub
The WFH Virtual Workshops for Psychosocial Professionals series was developed in collaboration with the WFH Psychosocial Committee. The series targets professionals who work with people with bleeding disorders and aims to provide useful and practical tools for their work. The topics covered in this educational series are based on the modules of the WFH Standardized […]
What is Prophylaxis?
The previous edition of this resource has also been translated into the following languages, with permission from the WFH, by NMOs: Farsi, Setswana This patient handbook contains basic information about prophylaxis, the regular infusion of clotting factor concentrates in order to prevent bleeding. Prophylaxis is the goal of treatment for people with severe hemophilia, allowing […]
Report on the Annual Global Survey 2020
The Report on Annual Global Survey (AGS) includes demographic and treatment data, providing a global snapshot of people with hemophilia, von Willebrand disease, other rare factor deficiencies, and inherited platelet disorders around the world.