RecruitingPhase 1Phase 2NCT06379789

A Study to Investigate the Safety and Effectiveness of a Coagulation Factor IX Gene Insertion Therapy (REGV131-LNP1265) in Pediatric, Adolescent and Adult Participants With Hemophilia B

A Two-Part Open-Label Study of REGV131-LNP1265, A CRISPR/Cas9 Based Coagulation Factor IX Gene Insertion Therapy in Participants With Hemophilia B


Sponsor

Regeneron Pharmaceuticals

Enrollment

130 participants

Start Date

Sep 11, 2024

Study Type

INTERVENTIONAL

Conditions

Summary

Participants in this study have a genetic mutation, specifically in the coagulation (blood clotting) Factor 9 gene that causes severe or moderately severe hemophilia B. This study is researching an experimental gene insertion therapy (the adding of a gene into your DNA) called REGV131-LNP1265, also called the "study drug". Gene insertion therapy aims to teach the body how to produce clotting factor long-term, without the need for factor replacement therapy. The main aim of this study is to find a safe and well-tolerated dose of the study drug by checking the side effects that may happen from taking it. The study is looking at several other research questions including: * How much study drug is in the blood at different times * Whether the body makes antibodies against parts of the study drug, which could make the drug less effective or could lead to side effects. Antibodies are proteins produced by the body's immune system in response to a foreign substance * Whether the body makes antibodies against the clotting factor replacement therapy * How quality of life is affected by hemophilia B and if it changes after taking study drug * How joint health is affected by hemophilia B and if it changes after taking study drug * How often visits are required for the emergency room, urgent care center, physician's office, hospital, telephone or online are required as a result of bleeding events, and if the frequency changes after taking study drug * How often factor replacement therapy is needed, both on a regular basis for prevention of bleeding, and as needed to treat bleeding events (and it if changes after taking study drug) * Whether there is a difference in 2 different methods for measuring Factor 9 activity in the blood


Eligibility

Sex: MALEMin Age: 18 Years

Inclusion Criteria3

  • Confirmed diagnosis of severe or moderately severe hemophilia B with medical history of FIX functional activity (≤2% or \<0.02 IU/mL) or documented genotype known to produce severe hemophilia B
  • Currently taking FIX prophylaxis and previous experience with FIX therapy, as defined in the protocol
  • Participation in the lead-in period of this interventional study OR a separate lead-in study (R0000-HEMB-2187 \[NCT05568459\]) for at least 6 months for ABR data while taking FIX prophylaxis, as defined in the protocol

Exclusion Criteria10

  • History of FIX inhibitor (clinical or laboratory-based assessment) on 2 or more occasions
  • Bethesda inhibitor titer greater than the upper limit of normal (ULN) at screening
  • Detectable pre-existing antibodies to the adeno-associated virus serotype 8 (AAV8) capsid; as measured by enzyme-linked immunosorbent assay (ELISA) at prescreening (or final lead-in visit, if applicable).
  • Any significant underlying liver disease such as: cholestatic liver disease, liver cirrhosis, portal hypertension, splenomegaly, hepatic encephalopathy
  • Evidence of advanced liver fibrosis, as defined in the protocol
  • Evidence of cirrhosis and/or portal hypertension as assessed by abdominal ultrasound at screening or measured within 6 months prior to the screening visit
  • History of arterial or venous thrombo-embolic events, as defined in the protocol
  • History of hypersensitivity to corticosteroids or known medical condition that requires chronic administration of corticosteroids
  • Previously received any AAV gene-based therapy or intends to receive approved or investigational AAV-based gene therapy other than REGV131-LNP1265 during the study period
  • NOTE: Other Inclusion/Exclusion Protocol Defined Criteria Apply

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Interventions

DRUGREGV131

Single dose administered via intravenous (IV) infusion before LNP1265

DRUGLNP1265

Single dose administered via IV infusion following REGV131


Locations(40)

Orthopaedic Hemophilia Treatment Center

Los Angeles, California, United States

David Geffen School of Medicine at UCLA

Los Angeles, California, United States

Children's Hospital Los Angeles

Los Angeles, California, United States

University of California Davis

Sacramento, California, United States

University California San Francisco

San Francisco, California, United States

University of Colorado Hemophilia and Thrombosis Center

Aurora, Colorado, United States

Yale HTC

New Haven, Connecticut, United States

University of Florida

Gainesville, Florida, United States

Indiana Hemophilia and Thrombosis Center

Indianapolis, Indiana, United States

Tulane University School of Medicine, Louisiana Center for Bleeding and Clotting Disorders

New Orleans, Louisiana, United States

University of Michigan

Ann Arbor, Michigan, United States

Nationwide Children's Hospital

Columbus, Ohio, United States

Children's Hospital of Philadelphia (CHOP)

Philadelphia, Pennsylvania, United States

Royal Prince Alfred Hospital, Haemophilia Treatment Centre

Camperdown, New South Wales, Australia

University of Alberta Hospital

Edmonton, Alberta, Canada

McMaster University Medical Centre - Hamilton Health Sciences

Hamilton, Ontario, Canada

McGill University Health Center (MUHC)

Montreal, Quebec, Canada

Hospices Civils de Lyon

Bron, Lyon, France

Hemostase Clinique, Institut Coeur Poumon

Lille, Nord, France

Hopital Necker

Paris, Île-de-France Region, France

University Hospital Frankfurt

Frankfurt am Main, Hesse, Germany

University Hospital Hamburg Eppendorf

Hamburg, Germany

Fondazione Istituto di Ricovero e Cura a Carattere Scientifico (IRCCS) Ca Granda Ospedale Maggiore Policlinico

Milan, Lombardy, Italy

Irccs Humanitas Research Hospital

Rozzano, Lombardy, Italy

Ospedale san Bortolo

Vicenza, Italy

Hospital Universitario Virgen del Rocio

Seville, Andalusia, Spain

Complejo Hospitalario Universitario de A Coruña (Edificio Teresa Herrera-Materno Infantil)

A Coruña, Galicia, Spain

Hospital Clinico Universitario Virgen De La Arrixaca

El Palmar, Murcia, Spain

Hospital Universitario Central de Asturias

Oviedo, Principality of Asturias, Spain

Hospital Universitario Vall d'Hebron

Barcelona, Spain

Hospital Universitario La Paz

Madrid, Spain

Haemostasis and Thrombosis Unit, Hospital La Fe

Valencia, Spain

Hospital Universitario Miguel Servet

Zaragoza, Spain

Glasgow Royal Infirmary - Clinical Research Facility

Glasgow, Scotland, United Kingdom

Queen Elizabeth Hospital Birmingham

Birmingham, West Midlands, United Kingdom

Addenbrooke's Hospital, Cambridge University Hospitals NHS FT

Cambridge, United Kingdom

Pathology and Pharmacy Building, The Royal London Hospital

London, United Kingdom

Royal Free London NHS Foundation Trust

London, United Kingdom

St. Thomas' Hospital

London, United Kingdom

Hammersmith Hospital Comprehensive Care Centre

London, United Kingdom

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