Tracks outcomes of people with Gaucher disease, including during pregnancy
Follows people with Gaucher disease over time, with and without treatment, including pregnancy.
Plain-language title generated from the registry record
Registry title: International Collaborative Gaucher Group (ICGG) Gaucher Disease Registry & Pregnancy Sub-registry
Key facts
- Where
- Ann Arbor, Aurora, Baltimore, Beverly Hills, Boston, Camden, Charlotte, Charlottesville, Chicago, Cincinnati, Cleveland, Columbia, Columbus, Coral Gables, Coral Springs, Dallas, Decatur, Detroit, Dublin, Durham, Fairfax, Fort Worth, Grand Rapids, Greenville, Hackensack, Hershey, Huntington, Indianapolis, Iowa City, Jacksonville, Kansas City, Las Vegas, Little Rock, Los Angeles, Louisville, Milwaukee, Minneapolis, Morristown, Nashville, New Brunswick, New Haven, New Hyde Park, New Orleans, New York, Norfolk, Omaha, Orange, Paterson, Philadelphia, Phoenix, Pittsburgh, Portland, Providence, Rochester, Sacramento, Salt Lake City, San Diego, San Francisco, Seattle, St Louis, Stanford, Syracuse, Tacoma, Tampa, Tucson, Valhalla, and Washington D.C., United StatesSee the 86 sites
Where in United States
- University Of Michigan Pediatrics- Site Number : 840107Ann Arbor, United StatesTaking people
- University Of Colorado At Denver Genetics- Site Number : 840068Aurora, United StatesTaking people
- BaltimoreBaltimore, United StatesNo longer taking part
- Tower Hematology Oncology Medical Group- Site Number : 840056Beverly Hills, United StatesTaking people
- Boston Children's Hospital- Site Number : 840092Boston, United StatesTaking people
- Massachusetts General Hospital-Genetics- Site Number : 840062Boston, United StatesTaking people
- Cooper Health Center- Site Number : 840098Camden, United StatesNo longer taking part
- Atrium Health Carolinas Medical Center Hospital- Site Number : 840065Charlotte, United StatesTaking people
- University Of Virginia School Of Medicine-Pediatrics- Site Number : 840078Charlottesville, United StatesNo longer taking part
- Ann & Robert H. Lurie Children's Hospital of Chicago- Site Number : 840011Chicago, United StatesTaking people
- Ann & Robert H. Lurie Children's Hospital of Chicago- Site Number : 840013Chicago, United StatesTaking people
- Rush University Medical Center Genetics- Site Number : 840079Chicago, United StatesTaking people
- Cincinnati Children's Hospital Medical Center- Site Number : 840026Cincinnati, United StatesTaking people
- Cleveland Clinic - Cleveland- Site Number : 840048Cleveland, United StatesTaking people
- University Hospitals Cleveland Medical Center- Site Number : 840119Cleveland, United StatesTaking people
- University Of Missouri Health System Department Of Genetics- Site Number : 840031Columbia, United StatesTaking people
- Nationwide Children's Hospital- Site Number : 840091Columbus, United StatesTaking people
- University of Miami- Site Number : 840006Coral Gables, United StatesTaking people
- University of Miami Sylvester Comprehensive Cancer Center - Coral Springs- Site Number : 840075Coral Springs, United StatesTaking people
- Baylor Institute of Metabolic Disease- Site Number : 840058Dallas, United StatesNo longer taking part
- Emory University School Of Medicine- Human Genetics- Site Number : 840060Decatur, United StatesTaking people
- Children's Hospital of Michigan- Site Number : 840066Detroit, United StatesTaking people
- Lsd Data Registry Site Llc- Site Number : 840094Dublin, United StatesTaking people
- Duke University Medical Center Genetics Dept- Site Number : 840037Durham, United StatesTaking people
- O & O Alpan- Site Number : 840025Fairfax, United StatesTaking people
- Cook Children's Medical Center- Site Number : 840024Fort Worth, United StatesNo longer taking part
- Corewell Health - Helen DeVos Children's Hospital (HDVCH)- Site Number : 840019Grand Rapids, United StatesNo longer taking part
- Infusion Associates - Grand Rapids- Site Number : 840050Grand Rapids, United StatesNo longer taking part
- Greenwood Genetic Center - Greenville- Site Number : 840055Greenville, United StatesTaking people
- Joseph M. Sanzari Children'S Hospital- Site Number : 840101Hackensack, United StatesTaking people
- Penn State Health Milton South Hershey Medical Center- Site Number : 840126Hershey, United StatesTaking people
- NYU Langone Health - Perlmutter Cancer Center - Huntington- Site Number : 840040Huntington, United StatesTaking people
- Indianapolis University School Of Medicine- Site Number : 840027Indianapolis, United StatesTaking people
- University of Iowa- Site Number : 840032Iowa City, United StatesTaking people
- University Of Florida Pediatrics Genetics- Site Number : 840121Jacksonville, United StatesTaking people
- The Atwal Clinic- Site Number : 840112Jacksonville, United StatesNo longer taking part
- Children's Mercy Adelle Hall Campus- Site Number : 840063Kansas City, United StatesNo longer taking part
- Children's Specialty Center - Las Vegas- Site Number : 840008Las Vegas, United StatesNo longer taking part
- Arkansas Children's Hospital- Site Number : 840109Little Rock, United StatesTaking people
- University of Arkansas for Medical Sciences- Site Number : 840113Little Rock, United StatesTaking people
- Southern California Permanente Medical Group- Site Number : 840108Los Angeles, United StatesTaking people
- Usc Health Sciences Center Dept Of Genetics- Site Number : 840082Los Angeles, United StatesNo longer taking part
- University of Louisville - Health Sciences Center- Site Number : 840030Louisville, United StatesNo longer taking part
- MilwaukeeMilwaukee, United StatesTaking people
- Children's Hospitals and Clinics of Minnesota- Site Number : 840046Minneapolis, United StatesTaking people
- Children's Hospitals and Clinics of Minnesota- Site Number : 840114Minneapolis, United StatesTaking people
- M Health Fairview University of Minnesota Medical Center - West Bank- Site Number : 840076Minneapolis, United StatesTaking people
- Atlantic Health System- Site Number : 840099Morristown, United StatesTaking people
- Vanderbilt University Medical Center - Medical Laboratories- Site Number : 840049Nashville, United StatesTaking people
- Saint Peter's University Hospital - New Brunswick- Site Number : 840016New Brunswick, United StatesTaking people
- Yale University School of Medicine- Site Number : 840047New Haven, United StatesTaking people
- Northwell Health- Site Number : 840102New Hyde Park, United StatesTaking people
- Tulane University School of Medicine- Site Number : 840001New Orleans, United StatesNo longer taking part
- Columbia University Irving Medical Center- Site Number : 840125New York, United StatesTaking people
- Icahn School of Medicine at Mount Sinai- Site Number : 840005New York, United StatesTaking people
- Metropolitan Hospital Center- Site Number : 840110New York, United StatesTaking people
- Children's Hospital of The King's Daughters- Site Number : 840072Norfolk, United StatesNo longer taking part
- University of Nebraska Medical Center- Site Number : 840084Omaha, United StatesTaking people
- Children's Hospital of Orange County- Site Number : 840074Orange, United StatesTaking people
- University of California Irvine Medical Center- Site Number : 840036Orange, United StatesNo longer taking part
- St. Joseph's Regional Medical Center - Paterson- Site Number : 840057Paterson, United StatesTaking people
- Children'S Hospital Of Philadelphia Hup Medical Genetics- Site Number : 840089Philadelphia, United StatesTaking people
- The Children's Hospital of Philadelphia- Site Number : 840034Philadelphia, United StatesTaking people
- Phoenix Children's Hospital- Site Number : 840003Phoenix, United StatesTaking people
- UPMC Children's Hospital of Pittsburgh- Site Number : 840023Pittsburgh, United StatesTaking people
- Maine Medical Partners Pediatric Specialty Care- Site Number : 840064Portland, United StatesTaking people
- Oregon Health & Science University (OHSU)- Site Number : 840080Portland, United StatesTaking people
- Rhode Island Hospital Genetics- Site Number : 840053Providence, United StatesNo longer taking part
- University of Rochester Medical Center- Site Number : 840105Rochester, United StatesTaking people
- Uc Davis Mind Institute- Site Number : 840010Sacramento, United StatesTaking people
- Kaiser Permanente Sacramento Medical Center- Site Number : 840042Sacramento, United StatesNo longer taking part
- University of Utah- Site Number : 840043Salt Lake City, United StatesTaking people
- University of California at San Diego- Site Number : 840007San Diego, United StatesNo longer taking part
- University of California San Francisco - Parnassus Campus- Site Number : 840051San Francisco, United StatesTaking people
- Seattle Children's Hospital- Site Number : 840028Seattle, United StatesTaking people
- University of Washington Medical Center- Site Number : 840059Seattle, United StatesNo longer taking part
- Washington University- Site Number : 840100St Louis, United StatesTaking people
- Stanford University Medical Center- Site Number : 840022Stanford, United StatesTaking people
- SUNY Upstate Medical University - Site Number : 840052Syracuse, United StatesTaking people
- Mary Bridge Children's Hospital & Health Center- Site Number : 840115Tacoma, United StatesTaking people
- University Of Florida-Genetics- Site Number : 840096Tampa, United StatesTaking people
- TampaTampa, United StatesNo longer taking part
- University of Arizona- Site Number : 840015Tucson, United StatesTaking people
- New York Medical College- Site Number : 840039Valhalla, United StatesTaking people
- Washington D.C.Washington D.C., United StatesTaking people
- Children's National Medical Center - Washington- Site Number : 840067Washington D.C., United StatesTaking people
Questions to ask the study team
- How often do I need to come in, and for how long each time?
- Are travel costs paid?
- Can I keep my own doctor?
- What happens if I want to stop?
Trial details
- Who runs it
- Genzyme, a Sanofi Company
- Trial code
- NCT00358943
- Record updated
- 14 October 2026
- Original description
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.Read full original descriptionShow less
Gaucher Disease Registry Protocol
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: 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.