WFH Gene Therapy Registry – User guide for people with hemophilia – German
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]. This guide is […]
WFH Gene Therapy Registry – User guide for hemophilia treatment centres – Italian
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 – User guide for hemophilia treatment centres – German
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 – German
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 […]
WFH Gene Therapy Registry – Basics of hemophilia, gene therapy, and long-term data collection – Italian
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 […]
Report on the Annual Global Survey 2021
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.
What is gene therapy?
This patient handbook contains basic information about gene therapy for hemophilia. 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 medical problem, the WFH recommends that you contact your physician or local treatment centre. Before administering any […]
Clinical trials for hemophilia
This handbook contains basic information about clinical trials for hemophilia. 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 medical problem, the WFH recommends that you contact your physician or local treatment centre. Before administering any products, […]
Questions to Ask Your Doctor Before Deciding to Take Gene Therapy
For people considering taking gene therapy, it is extremely important to learn as much as possible about if you are a good candidate, what the potential benefits and risks are, and what to expect during the procedure, and essential that your questions are answered. It may be helpful to write down a list of questions […]
WFH Guidelines for NMO Capacity Development
The WFH Guidelines for NMO Capacity Development were created to provide clear benchmarks and a framework for regular assessments to support NMOs in developing their capacities based on best practices in key organizational development areas. The guidelines offer a systematic and participatory approach to organizational capacity development based on a framework for capacity development. It […]
WBDR 2021 Data Report
The World Bleeding Disorders Registry (WBDR) 2021 Data Report provides aggregate data on more than 9,000 people with hemophilia around the globe who are enrolled in the WBDR. 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 […]
Monitoring Patient Safety in Clinical Trials
Ensuring patient safety is of paramount importance during the clinical trial process. There are many levels of study approval and monitoring to protect the safety of participants in clinical trials, and a system in place for collecting and reporting safety outcomes during a study. The WFH does not engage in the practice of medicine and […]