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Now available: new gene therapy clinical trial resources

The World Federation of Hemophilia (WFH) is dedicated to improving and sustaining treatment and care for people with inherited bleeding disorders around the world. The rapid evolution of treatment options for bleeding disorders—and the recent regulatory approval of the first gene therapy product—mean that understanding how treatments go from the laboratory to the patient is critical.

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To meet this need, the WFH is developing an educational initiative on clinical trials. This effort is strategically aligned with the WFH vision of Treatment for All and our strategic priorities, both of which aim to improve and sustain care for people with inherited bleeding disorders around the world.

The first step for this initiative is the launch of our clinical trials education page, along with the WFH Gene Therapy for Hemophilia Clinical Trials Pipeline Tool. Both of these endeavours are designed to support the knowledge and understanding of clinical trials for the global hemophilia community, and encourage the conversation related to this area of innovation.

The new clinical trials education page includes general information, such as why clinical trials are needed, how they are conducted, and how to participate in one. The page also includes downloadable documents, such as “Questions to ask before participating in a clinical trial”. The WFH Gene Therapy for Hemophilia Clinical Trials Pipeline Tool is a new way to view all ongoing gene therapy clinical trials. It allows users to search based on therapeutic approach, clinical trial phase, and more.

To visit the clinical trials education page, please click here. To visit the WFH Gene Therapy for Hemophilia Clinical Trials Pipeline Tool, please click here.

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Disclaimer

The information on the WFH website is provided for general information purposes only. 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.

While every effort has been made to ensure the accuracy of the information on this site, the WFH does not guarantee the information is accurate, and is not responsible in any way whatsoever for damages arising out of the use of this website or any of the information contained herein.

Messages posted to WFH discussion forums, Facebook, Twitter, and other social media platforms do not represent the opinions of the World Federation of Hemophilia, its staff, or Board of Directors. The author of a message is solely responsibility for its content. Information posted on WFH social networks and platforms should never be a substitute for individualized professional medical advice, even when the author has medical qualifications or is considered an authority. Information posted to a discussion group should not be used to diagnose or treat a specific health problem without consulting a qualified healthcare professional. The WFH recommends that you contact your physician or local treatment centre if you have any individual questions or concerns.

References and links to other websites or references to other organizations, products, services, or publications do not constitute endorsement or approval by the WFH. The WFH is not responsible and assumes no liability for the content of any linked websites.

Fraud Alert

Unauthorized solicitations – Warning

The WFH has been made aware of various correspondences—circulated via e-mail and telephone—coming from individuals impersonating WFH staff or falsely stating that they are associated with the WFH. These correspondences, which may seek to obtain money using the name of someone affiliated with the WFH, are fraudulent and come from outside of our organization.

If you receive a suspicious solicitation, exercise extreme caution. In the case of an email, look at the email address to see if it looks suspicious (for example, all WFH emails come from @wfh.org).

We are asking you to remain vigilant, and if you have any doubts about the correspondence, please forward the email to the WFH at [email protected] or call +1 514-875-7944.