The World Federation of Hemophilia Gene Therapy Registry

First published 01/02/2024

Last updated 17/10/2024

Data source

Human

Other

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Administrative details

PURI: https://redirect.ema.europa.eu/resource/50044

Data source ID: 50044

Name of data source: The World Federation of Hemophilia Gene Therapy Registry

Data source acronym: The WFH Gene Therapy Registry

Data holder: World Federation of Hemophilia (WFH)

Data source type: Other

Data source type, other: Prospective studies database

Main financial support: Funding from industry or contract research

Care setting: Primary care – specialist level (e.g. paediatricians)

Data source qualification If the data source has successfully undergone a formal qualification process (e.g., from the EMA, ISO or other certifications), this should be described.: Yes

Description of the qualification: EMA qualification process ongoing

Data source website: https://www.wfh.org

Contact details

Mayss Naccache

Main

mnaccache@wfh.org

Barbara Konkle

Alternate

BarbaraK@bloodworksnw.org

Data source regions and languages

Data source countries: Belgium
France
Germany
Ireland
Italy
Netherlands
Spain
Sweden
Switzerland
United Kingdom

Data source languages: English

Data source establishment

Data source established: 15/06/2022

Data source time span: First collection: 15/10/2023
The date when data started to be collected or extracted.

Publications

Data source publications