NCT00954460

Brief Summary

Gaucher disease is a rare lysosomal storage disorder caused by the deficiency of the enzyme glucocerebrosidase (GCB). Due to the deficiency of functional GCB, glucocerebroside accumulates within macrophages leading to cellular engorgement, organomegaly, and organ system dysfunction. The purpose of this treatment protocol is to observe the safety of velaglucerase alfa in patients with type 1 Gaucher disease who are either treatment naive (newly diagnosed) or who are currently being treated with the Enzyme Replacement Therapy (ERT) imiglucerase.

Trial Health

55
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Trial Health Score

Automated assessment based on enrollment pace, timeline, and geographic reach

Geographic Reach
1 country

32 active sites

Status
unknown

Health score is calculated from publicly available data and should be used for screening purposes only.

Trial Relationships

Click on a node to explore related trials.

Study Timeline

Key milestones and dates

First Submitted

Initial submission to the registry

August 5, 2009

Completed
2 days until next milestone

First Posted

Study publicly available on registry

August 7, 2009

Completed
Last Updated

May 21, 2021

Status Verified

May 1, 2021

First QC Date

August 5, 2009

Last Update Submit

May 18, 2021

Conditions

Keywords

VPRIVEnzyme Replacement TherapyGaucher diseaseglucocerebrosidasebeta-glucocerebrosidaseAcid beta-glucocerebrosidaseglucosylceramidaseD-glucosyl-N-acylsphingosine glucohydrolasegene activationhuman

Interventions

up to 60 U/kg, every other week via intravenous infusion

Also known as: VPRIV, Gene activated human glucocerebrosidase, GA-GCB

Eligibility Criteria

Age3 Years+
Sexall
Age GroupsChild (0-17), Adult (18-64), Older Adult (65+)

You may qualify if:

  • The patient has a documented diagnosis of type 1 Gaucher disease
  • The patient is \> 2 years of age
  • The patient has NOT previously experienced an anaphylactic or anaphylactoid reaction to another ERT including imiglucerase
  • Women of child-bearing potential must agree to use a medically acceptable method of contraception at all times during the study; and must have a negative result to a pregnancy test as required throughout their participation in the study. Male patients must use a medically acceptable method of birth control throughout their participation in the study and must report their partner's pregnancy.
  • The patient is sufficiently cooperative to participate in this treatment plan as judged by the Investigator
  • If the patient is naïve or new to treatment, the patient has one or more of the following (in absence of the following criteria, please call the sponsor for treatment justification):
  • Gaucher disease-related anemia
  • Moderate splenomegaly (2 to 3 cm below the left costal margin), by palpation
  • Gaucher disease-related thrombocytopenia
  • Gaucher disease-related palpable enlarged liver

Contact the study team to confirm eligibility.

Sponsors & Collaborators

Study Sites (32)

St Joseph's Hospital & Medical Center

Phoenix, Arizona, 85013, United States

Location

Tower Hematology Oncology

Beverly Hills, California, 90211-1850, United States

Location

Rady's Children's Hospital of San Diego

La Jolla, California, 92093, United States

Location

Southern California Permanente Medical Group

Los Angeles, California, 90027, United States

Location

The Permanente Medical Group

Sacramento, California, 95815, United States

Location

Stanford University Medical Genetics

Stanford, California, 94305-5208, United States

Location

Rocky Mountain Cancer Centers

Denver, Colorado, 80218, United States

Location

Yale University

New Haven, Connecticut, 06510, United States

Location

University Research Foundation for Lysosomal Storage Diseases

Coral Springs, Florida, 33065, United States

Location

Gainesville Hematology Oncology Associates

Gainesville, Florida, 32605-4218, United States

Location

Adventis Healthcare System dba Florida Hospital

Orlando, Florida, 32804-4603, United States

Location

East Lake Oncology

Palm Harbor, Florida, 34685, United States

Location

Emory Genetics

Decatur, Georgia, 30033, United States

Location

Children's Memorial Hospital

Chicago, Illinois, 60614, United States

Location

University of Iowa Hospitals and Clinics

Iowa City, Iowa, 52242, United States

Location

Annapolis Oncology Center

Annapolis, Maryland, 21401, United States

Location

Sinai Hospital of Baltimore

Baltimore, Maryland, 21215, United States

Location

University of Massachusetts

Shrewsbury, Massachusetts, 01545, United States

Location

Children's Hospitals and Clinics of Minnesota

Minneapolis, Minnesota, 55404, United States

Location

The University Research Foundation for Lysosomal Storage Diseases

Kansas City, Missouri, 64108-4619, United States

Location

St. Joseph's

Paterson, New Jersey, 07503, United States

Location

Hemophilia Center of Western New York Incorporated

Buffalo, New York, 14215, United States

Location

North Shore Hematology/Oncology - Manhasset

Manhasset, New York, 11030, United States

Location

New York University School of Medicine

New York, New York, 10016, United States

Location

Mount Sinai School of Medicine

New York, New York, 10029-6500, United States

Location

Fullerton Genetic

Asheville, North Carolina, 28801-4420, United States

Location

Duke Medical Center

Durham, North Carolina, 27710, United States

Location

Akron Children's Hospital

Akron, Ohio, 44308, United States

Location

Cincinnati Children's Hospital Medical Center

Cincinnati, Ohio, 45229, United States

Location

Children's Hospital of Philadelphia

Philadelphia, Pennsylvania, 19104, United States

Location

University of Virginia Health Systems

Charlottesville, Virginia, 22908-0386, United States

Location

O & O Alpan, LLC

Springfield, Virginia, 22152, United States

Location

Related Publications (1)

  • Pastores GM, Rosenbloom B, Weinreb N, Goker-Alpan O, Grabowski G, Cohn GM, Zahrieh D. A multicenter open-label treatment protocol (HGT-GCB-058) of velaglucerase alfa enzyme replacement therapy in patients with Gaucher disease type 1: safety and tolerability. Genet Med. 2014 May;16(5):359-66. doi: 10.1038/gim.2013.154. Epub 2013 Nov 21.

MeSH Terms

Conditions

Gaucher Disease

Interventions

Glucosylceramidase

Condition Hierarchy (Ancestors)

SphingolipidosesLysosomal Storage Diseases, Nervous SystemBrain Diseases, Metabolic, InbornBrain Diseases, MetabolicBrain DiseasesCentral Nervous System DiseasesNervous System DiseasesMetabolism, Inborn ErrorsGenetic Diseases, InbornCongenital, Hereditary, and Neonatal Diseases and AbnormalitiesLipidosesLipid Metabolism, Inborn ErrorsLysosomal Storage DiseasesMetabolic DiseasesNutritional and Metabolic DiseasesLipid Metabolism Disorders

Intervention Hierarchy (Ancestors)

GlucosidasesGlycoside HydrolasesHydrolasesEnzymesEnzymes and Coenzymes

Study Officials

  • Study Director

    Takeda

    STUDY DIRECTOR

Study Design

Study Type
expanded access
Sponsor Type
INDUSTRY
Responsible Party
SPONSOR

Study Record Dates

First Submitted

August 5, 2009

First Posted

August 7, 2009

Last Updated

May 21, 2021

Record last verified: 2021-05

Locations