International Collaborative Gaucher Group (ICGG) Gaucher Registry

This study is currently recruiting patients.

Sponsored By:	Genzyme
Information Provided By:	Genzyme
ClinicalTrials.gov Identifier:	NCT00358943

Purpose

The ICGG Gaucher Registry is an ongoing, international multi-center, strictly observational program that tracks the routine clinical outcomes for patients with Gaucher disease, irrespective of treatment status. No experimental intervention is involved; patients in the Registry undergo clinical assessments and receive care as determined by the patient’s treating physician.

The objectives of the Registry are:

Condition

Gaucher Disease Cerebroside Lipidosis Syndrome Glucocerebrosidase Deficiency Disease Glucosylceramide Beta-Glucosidase Deficiency Disease

Study Type: Observational

Study Design: Natural History, Longitudinal, Defined Population, Retrospective/Prospective Study

Further Study Details:
Study Start: 1991-04

The ICGG Gaucher Registry is an international program; in addition to the central contact information provided under the “Location” heading, patients may contact:

Eligibility Criteria

Ages Eligible for Study: Both

Inclusion Criteria: All patients with a confirmed diagnosis of Gaucher disease are eligible for inclusion in the Registry. Confirmed diagnosis is defined as: -documented β-glucocerebrosidase deficiency and/or mutation in the β-glucocerebrosidase gene.

For all patients, appropriate patient authorization will be obtained.

Exclusion Criteria:
No exclusion criteria for participation in the ICGG Gaucher Registry. Note: Registry participation does not exclude participation in other clinical studies.

Location Information

Please refer to this study by ClinicalTrials.gov identifier NCT00358943
Central Contact:
ICGG Gaucher Registry HelpLine 800-745-4447, Ext. x15500 help@gaucherregistry.com
ICGG Gaucher Registry HelpLine 617-591-5500 help@gaucherregistry.com

Registry participation is worldwide and not limited by facility; facilities not yet active may enroll upon identification of a patient.

More Information

Study ID Numbers: ICGG Gaucher Registry
ClinicalTrials.gov Identifier: NCT00358943
Health Authority: United States: Institutional Review Board