The WFH Gene Therapy and World Bleeding Disorder Registries | Virtual Summit 2020
In this session from the WFH 2020 Virtual Summit, Barbara Konkle, Alfonso Iorio & Catherine Lambert will discuss & highlight two key WFH data programs: The WFH Gene Therapy Registry (GTR) and the WFH World Bleeding Disorders Registry (WBDR). With gene therapy for hemophilia on the horizon, there is an urgent need to develop a […]
Critical need for harmonized post marketing surveillance in gene therapy | Virtual Summit 2020
With regulatory approval of the first gene therapy product expected, there is an urgent need for a mechanism to collect long-term data on safety and variability and durability of efficacy. There will be elements required by regulators for post marketing surveillance and additional data needed to enhance our understanding of gene therapy outcomes and their […]
WBDR 2020 Data Report
The World Bleeding Disorders Registry (WBDR) 2020 Data Report provides aggregate data on more than 7,000 people with hemophilia around the globe who are enrolled in the WBDR.
The World Federation of Hemophilia Gene Therapy Registry – Informational Webinar
Listen to this 45-minute webinar presented on 9 November 2020 to learn more about the World Federation of Hemophilia (WFH) Gene Therapy Registry (GTR). Barbara Konkle, MD (WFH Board of Directors), Glenn Pierce, MD, PhD (WFH VP Medical) and Wolfgang Miesbach, MD (GTR Steering Committee member) discuss the protocol and core data set, the implementation […]
WBDR 2019 Data Report
The World Bleeding Disorders Registry (WBDR) 2019 Data Report provides aggregate data on more than 4,000 people with hemophilia around the globe who are registered in the WBDR.
WBDR 2018 Data Report
The World Bleeding Disorders Registry (WBDR) 2018 Data Report provides aggregate data on more than 1100 people with hemophilia around the globe who are registered in the WBDR.
Hemophilia Societies: Challenges and Development
Outlines the common challenges faced by hemophilia societies at various stages of development and offers practical solutions to help these organizations meet the needs of people with bleeding disorders.
A Study of Variations in the Reported Hemophilia B Prevalence Around the World
An analysis of the global prevalence of hemophilia B, based in large part on the WFH’s Global Survey Data. Prevalence data are extremely valuable information for the planning efforts of national healthcare agencies in setting priorities and allocating resources for the treatment of hemophilia B.
An Introduction to Key Concepts in Health Economics for Hemophilia Organizations
This publication aims to help patient organizations develop an understanding of health economics and advocate on issues relating to the economics of hemophilia care.
A Study of Variations in the Reported Hemophilia A Prevalence Around the World
An analysis of the global prevalence of hemophilia A, based in large part on the WFH’s Global Survey Data. Prevalence data are extremely valuable information for the planning efforts of national healthcare agencies in setting priorities and allocating resources for the treatment of hemophilia B.
Patient Outreach Guide for Hemophilia and Other Bleeding Disorders
This guide helps national hemophilia organizations plan and carry out an outreach campaign to identify people with hemophilia or other bleeding disorders who have not been diagnosed or are underserved by healthcare services.
Benefits of a National Patient Registry
Also Available In: Japanese Patient registries are crucial for monitoring trends in health, allocating resources, organizing and tracking distribution of treatment products, and improving the purchasing process on a national scale.