Last updated on July 2020

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


Brief description of study

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.

Clinical Study Identifier: NCT00358943

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Investigational Site Number 840075

Coral Springs, FL United States
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Investigational Site Number 840112

Jacksonville, FL United States
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Investigational Site Number 840027

Indianapolis, IN United States
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Investigational Site Number 840050

Grand Rapids, MI United States
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Investigational Site Number 840016

New Brunswick, NJ United States
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Investigational Site Number 840089

Philadelphia, PA United States
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Investigational Site Number 840034

Philadelphia, PA United States
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Investigational Site Number 840078

Charlottesville, VA United States
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Investigational Site Number 643002

sait-Petersburg, Russian Federation
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Recruitment Status: Open


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