Resources » The WFH Gene Therapy and World Bleeding Disorder Registries | Virtual Summit 2020

Year: 2020

Language: English

Author(s): World Federation of Hemophilia

Format: Video

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 global database to monitor the safety and efficacy of all patients who receive gene therapy. The WFH Gene Therapy Registry is being developed to fill this need. This session will focus on the core data set of this registry and the global implementation plan. Additionally, a 2-year update of the WBDR will be provided, along with an exciting announcement planned for 2020.

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, the WFH urges patients to check dosages with a physician or hemophilia centre staff, and to consult the pharmaceutical company’s printed instructions.

The WFH does not promote any particular pharmaceutical product and any mention of any commercial brand in this presentation is strictly for educational purposes.