database

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 […]

Guide to Developing a National Patient Registry

Having a national patient registry means being able to answer fundamental questions about the hemophilia population within a given country. This step-by-step guide outlines the basic principles of data collection, maintenance, and analysis and compares different types of registries.