Role of the Nurse Coordinator in Hemophilia Gene Therapy

Since the 1990s, clinical trials have studied the feasibility, safety, efficacy, and challenges of using gene therapy to cure hemophilia. In 2022, the U.S. Food and Drug Administration approved the first commercially available gene therapy treatment for hemophilia.

The purpose of this article is to examine the nurse coordinator's role in educating patients, preparing them for treatment, and providing comprehensive short- and long-term follow-up at a hemophilia treatment center.

Relevant literature, U.S. Food and Drug Administration package inserts, and clinical practice related to hemophilia gene therapy were reviewed. Discussion regarding psychosocial implications and interdisciplinary care were examined and synthesized into this article.

Hemophilia gene therapy expands on the existing hemophilia teatment center comprehensive care model. The gene therapy center of excellence framework highlights the importance of care coordination, patient education, psychosocial support, and interdisciplinary collaboration. The nurse coordinator role serves as liaison, advocate, and educator for patients and other clinicians.