Status:

RECRUITING

International Collaborative Gaucher Group (ICGG) Gaucher Disease Registry & Pregnancy Sub-registry

Lead Sponsor:

Genzyme, a Sanofi Company

Conditions:

Gaucher Disease

Cerebroside Lipidosis Syndrome

Eligibility:

All Genders

Brief Summary

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 treatme...

Eligibility Criteria

Inclusion

  • ICGG Gaucher Registry
  • All patients with a confirmed diagnosis of Gaucher disease are eligible for inclusion in the Registry. Confirmed diagnosis is defined as a documented β-glucocerebrosidase deficiency and/or mutation in the β-glucocerebrosidase gene.
  • For all patients, appropriate patient authorization will be obtained.
  • Gaucher Pregnancy Sub-registry:
  • be enrolled in the ICGG Gaucher Registry.
  • be pregnant, or have been pregnant with appropriate medical documentation available.
  • provide a signed informed consent and authorization form(s) to participate in the Sub-Registry prior to any Sub-Registry-related data collection being performed.

Exclusion

  • \- No exclusion criteria for participation in the ICGG Gaucher Registry and Sub-registry.

Key Trial Info

Start Date :

April 1 1991

Trial Type :

OBSERVATIONAL

Allocation :

ESTIMATED

End Date :

January 31 2034

Estimated Enrollment :

12000 Patients enrolled

Trial Details

Trial ID

NCT00358943

Start Date

April 1 1991

End Date

January 31 2034

Last Update

January 6 2026

Active Locations (318)

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Page 1 of 80 (318 locations)

1

Phoenix Children's Hospital- Site Number : 840003

Phoenix, Arizona, United States, 85013

2

University of Arizona- Site Number : 840015

Tucson, Arizona, United States, 85724

3

Arkansas Childrens Hospital- Site Number : 840109

Little Rock, Arkansas, United States, 72202

4

University of Arkansas for Medical Sciences- Site Number : 840113

Little Rock, Arkansas, United States, 72205