An Observational Cohort Study to Characterize the Effectiveness and Safety of HEMGENIX® in Patients With Hemophilia B

NCT ID: NCT06008938

Last Updated: 2025-12-26

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

RECRUITING

Total Enrollment

500 participants

Study Classification

OBSERVATIONAL

Study Start Date

2023-06-15

Study Completion Date

2043-08-01

Brief Summary

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This observational, post-authorization, long-term follow-up study aims to investigate the short and long-term effectiveness and safety of HEMGENIX in patients with hemophilia B. The study will also include a cohort of patients with hemophilia B treated with FIX prophylaxis to enable interpretation of relevant efficacy and safety findings of HEMGENIX.

Detailed Description

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Conditions

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Hemophilia B

Keywords

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Hemophilia B HEMGENIX

Study Design

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Observational Model Type

COHORT

Study Time Perspective

PROSPECTIVE

Study Groups

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HEMGENIX

Patients with hemophilia B treated with HEMGENIX in countries where HEMGENIX is approved for commercial use.

HEMGENIX

Intervention Type GENETIC

HEMGENIX is a gene therapy medicinal product that aims to deliver a factor IX (FIX) gene expression cassette to the liver of patients with hemophilia B.

FIX Prophylaxis

Patients with hemophilia B on FIX prophylaxis and enrolled in American Thrombosis and Hemostasis Network (ATHN) Transcends (A Natural History Cohort Study of the Safety, Effectiveness, and Practice of Treatment in People with Non-Neoplastic Hematologic Disorders) Hemophilia Cohort, or a similar registry.

Factor IX (FIX)

Intervention Type BIOLOGICAL

FIX prophylaxis therapy

Interventions

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HEMGENIX

HEMGENIX is a gene therapy medicinal product that aims to deliver a factor IX (FIX) gene expression cassette to the liver of patients with hemophilia B.

Intervention Type GENETIC

Factor IX (FIX)

FIX prophylaxis therapy

Intervention Type BIOLOGICAL

Other Intervention Names

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Etranacogene dezaparvovec

Eligibility Criteria

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Inclusion Criteria

* HEMGENIX Cohort:
* \- Treatment with commercial HEMGENIX.
* \- Have provided signed written informed consent within 3 months before or within 6 months after HEMGENIX treatment, or within 6 months of when the study is initiated at the participating site.
* FIX Prophylaxis Cohort:
* \- Adult patients (≥ 18 years) with hemophilia B who have consented and enrolled in ATHN Transcends Hemophilia Cohort (or a similar registry) and are receiving FIX prophylaxis therapy.

Exclusion Criteria

* HEMGENIX Cohort:
* \- The patient population that will be observed in this study must not have been treated with etranacogene dezaparvovec in a clinical trial.
Minimum Eligible Age

18 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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CSL Behring

INDUSTRY

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Principal Investigators

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Global Program Director

Role: STUDY_DIRECTOR

CSL Behring

Locations

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American Thrombosis and Hemostasis Network

Rochester, New York, United States

Site Status RECRUITING

Medical University Vienna

Vienna, , Austria

Site Status RECRUITING

Aarhus Universitetshospital

Århus N, , Denmark

Site Status RECRUITING

Centre Hospitalier Universitaire de Brest / CHU Morvan

Brest, , France

Site Status RECRUITING

Centre Régional de Traitement de l'Hémophilie

Nantes, , France

Site Status RECRUITING

CHU Nancy - Hôpital Brabois

Vandœuvre-lès-Nancy, , France

Site Status RECRUITING

Klinik für Angiologie/ Hämostaseologie

Berlin, , Germany

Site Status RECRUITING

Hannover Medical School

Hanover, , Germany

Site Status RECRUITING

Hospital Alvaro Cunqueiro Dr. Manuel Rodriquez-Lopez

Vigo, , Spain

Site Status RECRUITING

University Hospital Bern Inselspital

Bern, , Switzerland

Site Status RECRUITING

Countries

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United States Austria Denmark France Germany Spain Switzerland

Central Contacts

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Trial Registration Coordinator

Role: CONTACT

Phone: +1 610-878-4697

Email: [email protected]

Other Identifiers

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EUPAS106066

Identifier Type: REGISTRY

Identifier Source: secondary_id

CSL222_4001

Identifier Type: -

Identifier Source: org_study_id