Tucson, Arizona 85724

  • Glucosidase Deficiency Disease


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: - To enhance understanding of the variability, progression, identification, and natural history of Gaucher disease, with the ultimate goal of better guiding and assessing therapeutic intervention. - To assist the Gaucher medical community with the development of recommendations for monitoring patients, and to provide reports on patient outcomes, to optimize patient care. - To characterize the Gaucher disease population. - To evaluate the long-term effectiveness of imiglucerase and of eliglustat. Gaucher Pregnancy Sub-registry: The primary objective of this Sub-registry is to track pregnancy outcomes, including complications and infant growth, in all women with Gaucher disease during pregnancy, regardless of whether they receive disease-specific therapy. No experimental intervention is given; thus a patient will undergo clinical assessments and receive standard of care treatment as determined by the patient's physician.If a patient consents to this Sub-registry, information about the patient's medical and obstetric history, pregnancy, and birth will be collected, and, if a patient consents to data collection for her infant, data on infant growth through month 36 postpartum will be collected.


Inclusion Criteria: 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 Criteria: - No exclusion criteria for participation in the ICGG Gaucher Registry and Sub-registry.



Primary Contact:

Study Director
Study Director
Genzyme, a Sanofi Company

Trial Transparency email recommended (Toll free number for US & Canada)
Phone: 800-633-1610 ext. 1 then #
Email: Contact-Us@sanofi.com

Backup Contact:

ICGG Gaucher Registry HelpLine
Phone: +1(617) 252-7500

Location Contact:

Tucson, Arizona 85724
United States

There is no listed contact information for this specific location.

Site Status: Recruiting

Data Source: ClinicalTrials.gov

Date Processed: April 17, 2023

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