Resources » WFH Gene Therapy Registry – User guide for hemophilia treatment centres

Year: 2022

Language: English

This resource is also available in: French Spanish

This resource is also available in: French, Spanish, German, Italian

Author(s): World Federation of Hemophilia

Format: Document

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 GTR, outlining how HTCs can successfully participate in the registry.

This user guide provides information on implementing the WFH GTR at your HTC, including complying with all regulatory and protocol requirements, obtaining ethics approval, obtaining informed consent from participants, and entering data into the registry.

Please reach out to WFH with questions regarding participation in the registry at [email protected].

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.