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International Collaborative Gaucher Group (ICGG) Gaucher Disease Registry & Pregnancy Sub-registry
Sponsor: Genzyme, a Sanofi Company
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 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.
Official title: Gaucher Disease Registry Protocol
Key Details
Gender
All
Age Range
Any - Any
Study Type
OBSERVATIONAL
Enrollment
12000
Start Date
1991-04-01
Completion Date
2034-01-31
Last Updated
2026-01-06
Healthy Volunteers
No
Conditions
Locations (318)
Phoenix Children's Hospital- Site Number : 840003
Phoenix, Arizona, United States
University of Arizona- Site Number : 840015
Tucson, Arizona, United States
Arkansas Childrens Hospital- Site Number : 840109
Little Rock, Arkansas, United States
University of Arkansas for Medical Sciences- Site Number : 840113
Little Rock, Arkansas, United States
Tower Hematology/Oncology Medical Group- Site Number : 840056
Beverly Hills, California, United States
University of California at Irvine- Site Number : 840036
Irvine, California, United States
Southern California Permanente Medical Group- Site Number : 840108
Los Angeles, California, United States
USC Health Sciences Center Dept of Genetics- Site Number : 840082
Los Angeles, California, United States
Children's Hospital of Orange County- Site Number : 840074
Orange, California, United States
Stanford Unviersity MC Dept of Genetics- Site Number : 840022
Palo Alto, California, United States
UC Davis MIND Institute- Site Number : 840010
Sacramento, California, United States
Kaiser Permanente Hospital- Site Number : 840042
Sacramento, California, United States
University of California at San Diego- Site Number : 840007
San Diego, California, United States
University of California at San Francisco- Site Number : 840051
San Francisco, California, United States
Yale - Site Number : 840047
New Haven, Connecticut, United States
Children's National Medical Center- Site Number : 840067
Washington D.C., District of Columbia, United States
University Hematology Oncology- Site Number : 840075
Coral Springs, Florida, United States
University of Florida Pediatrics Genetics- Site Number : 840121
Jacksonville, Florida, United States
The Atwal Clinic- Site Number : 840112
Jacksonville, Florida, United States
University Of Miami SOM- Site Number : 840006
Miami, Florida, United States
University of Florida-Genetics- Site Number : 840096
Tampa, Florida, United States
Pediatric Endocrine Associates- Site Number : 840017
Tampa, Florida, United States
Emory University School of Medicine- Human Genetics- Site Number : 840060
Decatur, Georgia, United States
University of Colorado at Denver Genetics- Site Number : 840068
Aurora, Illinois, United States
Ann and Robert Lurie Children's Hospital- Site Number : 840011
Chicago, Illinois, United States
Ann and Robert Lurie Children's Hospital- Site Number : 840013
Chicago, Illinois, United States
Rush University Medical Center Genetics- Site Number : 840079
Chicago, Illinois, United States
Indianapolis University School of Medicine- Site Number : 840027
Indianapolis, Indiana, United States
University of Iowa- Site Number : 840032
Iowa City, Iowa, United States
University of Louisville- Genetics- Site Number : 840030
Louisville, Kentucky, United States
Tulane University Medical Center- Site Number : 840001
New Orleans, Louisiana, United States
Maine Medical Center Pediatrics- Site Number : 840064
Portland, Maine, United States
John Hopkins- Site Number : 840044
Baltimore, Maryland, United States
Massachusetts General Hospital-Genetics- Site Number : 840062
Boston, Massachusetts, United States
Boston Children's Hospital - PIN- Site Number : 840092
Boston, Massachusetts, United States
University of Michigan Pediatrics- Site Number : 840107
Ann Arbor, Michigan, United States
Children's Hospital of Michigan- Site Number : 840066
Detroit, Michigan, United States
Spectrum for Health- Site Number : 840019
Grand Rapids, Michigan, United States
Infusion Associates- Site Number : 840050
Grand Rapids, Michigan, United States
Children's Health Care- Site Number : 840114
Minneapolis, Minnesota, United States
Children's Hospital and Clinics of Minnesota- Site Number : 840046
Minneapolis, Minnesota, United States
University of Minnesota Medical Center Pediatrics- Site Number : 840076
Minneapolis, Minnesota, United States
University of Missouri Health System Department of Genetics- Site Number : 840031
Columbia, Missouri, United States
Children's Mercy Hospital- Pediatrics- Site Number : 840063
Kansas City, Missouri, United States
Washington University of St. Louis- Site Number : 840100
St Louis, Missouri, United States
University of Nebraska Medical Center- Pediatrics- Site Number : 840084
Omaha, Nebraska, United States
Children's Specialty Center of Nevada- Site Number : 840008
Las Vegas, Nevada, United States
Cooper Health Center- Site Number : 840098
Camden, New Jersey, United States
Joseph M. Sanzari Children's Hospital- Site Number : 840101
Hackensack, New Jersey, United States
Atlantic Health System- Site Number : 840099
Morristown, New Jersey, United States
St. Peter's University Hospital- Site Number : 840016
New Brunswick, New Jersey, United States
St. Joseph's Children's Hospital- Site Number : 840057
Paterson, New Jersey, United States
Northwell Health- Site Number : 840102
Manhasset, New York, United States
New York University School Of Medicine- Site Number : 840040
New York, New York, United States
Metropolitan Hospital Center- Site Number : 840110
New York, New York, United States
Mt. Sinai School of Medicine- Site Number : 840005
New York, New York, United States
Columbia University Irving Medical Center- Site Number : 840125
New York, New York, United States
University of Rochester Medical Center SOM- Site Number : 840105
Rochester, New York, United States
State University of New York- Site Number : 840052
Syracuse, New York, United States
New York Medical College- Site Number : 840039
Valhalla, New York, United States
Carolinas Medical Center Hospital- Site Number : 840065
Charlotte, North Carolina, United States
Duke University Medical Center Genetics Dept- Site Number : 840037
Durham, North Carolina, United States
Cincinnati Children's Hospital Medical Center- Site Number : 840026
Cincinnati, Ohio, United States
University Hospitals Cleveland Medical Center- Site Number : 840119
Cleveland, Ohio, United States
Cleveland Clinic Foundation Pediatrics- Site Number : 840048
Cleveland, Ohio, United States
Nationwide Children's Hospital - PIN- Site Number : 840091
Columbus, Ohio, United States
LSD Data Registry Site LLC- Site Number : 840094
Dublin, Ohio, United States
Oregon Health & Science University (OHSU)- Site Number : 840080
Portland, Oregon, United States
Penn State Health Milton South Hershey Medical Center- Site Number : 840126
Hershey, Pennsylvania, United States
Children's Hospital of Philadelphia HUP Medical Genetics- Site Number : 840089
Philadelphia, Pennsylvania, United States
Children's Hospital of Philadelphia- Site Number : 840034
Philadelphia, Pennsylvania, United States
University of Pittsburgh- Site Number : 840023
Pittsburgh, Pennsylvania, United States
Rhode Island Hospital Genetics- Site Number : 840053
Providence, Rhode Island, United States
Greenwood Genetcs- Site Number : 840055
Greenville, South Carolina, United States
Vanderbilt University Hospital-Pediatrics- Site Number : 840049
Nashville, Tennessee, United States
Baylor Research Center- Site Number : 840058
Dallas, Texas, United States
Cook Children's Health Care System- Site Number : 840024
Fort Worth, Texas, United States
University of Utah Department of Medical Genetics- Site Number : 840043
Salt Lake City, Utah, United States
University of Virginia School of Medicine-Pediatrics- Site Number : 840078
Charlottesville, Virginia, United States
O&O Alpan, LLC- Site Number : 840025
Fairfax, Virginia, United States
Children's Hospital of the Kings Daughters- Site Number : 840072
Norfolk, Virginia, United States
Seattle Children's Hospital- Site Number : 840028
Seattle, Washington, United States
University Of Washington Medical Center- Site Number : 840059
Seattle, Washington, United States
Multicare Health System ¿ Mary Bridge Childrens Hospital- Site Number : 840115
Tacoma, Washington, United States
Children's Hospital of Wisconsin-Pediatrics- Site Number : 840054
Milwaukee, Wisconsin, United States
Investigational Site Number : 150661
CABA, Buenos Aires, Argentina
Investigational Site Number : 032014
Ciudad de Buenos Aires, Buenos Aires, Argentina
Investigational Site Number : 032003
La Plata, Buenos Aires, Argentina
Investigational Site Number : 151085
Sarandí, Buenos Aires, Argentina
Investigational Site Number : 032012
Buenos Aires, Argentina
Investigational Site Number : 154176
Corrientes, Argentina
Investigational Site Number : 032011
Córdoba, Argentina
Investigational Site Number : 151431
Sydney, New South Wales, Australia
Investigational Site Number : 151069
Westmead, New South Wales, Australia
Investigational Site Number : 151010
Brisbane, Queensland, Australia
Investigational Site Number : 151491
Douglas, Queensland, Australia
Investigational Site Number : 151002
Adelaide, South Australia, Australia
Investigational Site Number : 151725
Hobart, Tasmania, Australia
Investigational Site Number : 151011
Clayton, Victoria, Australia
Investigational Site Number : 151008
Parkville, Victoria, Australia
Investigational Site Number : 151015
Murdoch, Western Australia, Australia
Investigational Site Number : 150722
Antwerp, Belgium
Investigational Site Number : 151156
Bruges, Belgium
Investigational Site Number : 151796
Brussels, Belgium
Investigational Site Number : 150944
Brussels, Belgium
Investigational Site Number : 152345
Brussels, Belgium
Investigational Site Number : 150517
Brussels, Belgium
Investigational Site Number : 154285
Edegem, Belgium
Investigational Site Number : 151134
Ghent, Belgium
Investigational Site Number : 151668
Leuven, Belgium
Hospital das Clínicas da Universidade Federal do Paraná - HCUFPR- Site Number : 076010
Curitiba, Paraná, Brazil
Hospital de Clinicas de Porto Alegre- Site Number : 076007
Porto Alegre, Rio Grande do Sul, Brazil
Hospital e Maternidade Celso Pierro - PUC-Campinas- Site Number : 076012
Campinas, São Paulo, Brazil
Hospital das Clinicas da Faculdade de Medicina de Ribeirao Preto- Site Number : 076001
Ribeirão Preto, São Paulo, Brazil
Faculdade De Medicina - Unicamp- Site Number : 076005
Campinas, Brazil
HEMORIO- Site Number : 076006
Rio de Janeiro, Brazil
Instituto de Genética e Erros Inatos do Metabolismo- Site Number : 076002
São Paulo, Brazil
Hospital das Clinicas da Faculdade de Medicina da Universidade de Sao Paulo- Site Number : 076008
São Paulo, Brazil
Investigational Site Number : 100001
Sofia, Bulgaria
Investigational Site Number : 151164
Sofia, Bulgaria
Investigational Site Number : 124014
Calgary, Alberta, Canada
Investigational Site Number : 124002
Edmonton, Alberta, Canada
Investigational Site Number : 124010
Vancouver, British Columbia, Canada
Investigational Site Number : 124011
Vancouver, British Columbia, Canada
Investigational Site Number : 124019
Winnipeg, Manitoba, Canada
Investigational Site Number : 124022
Moncton, New Brunswick, Canada
Investigational Site Number : 124024
Kingston, Ontario, Canada
Investigational Site Number : 124005
Kingston, Ontario, Canada
Investigational Site Number : 124021
London, Ontario, Canada
Investigational Site Number : 124006
Toronto, Ontario, Canada
Investigational Site Number : 124013
Toronto, Ontario, Canada
Investigational Site Number : 124001
Sherbrooke, Quebec, Canada
Investigational Site Number : 151787
Beijing, China
Investigational Site Number : 1560001
Beijing, China
Investigational Site Number : 156003
Beijing, China
Investigational Site Number : 152357
Guangzhou, China
Investigational Site Number : 1560002
Guangzhou, China
Investigational Site Number : 152358
Hangzhou, China
Investigational Site Number : 152359
Hangzhou, China
Investigational Site Number : 157252
Nanjing, China
Investigational Site Number : 152356
Shanghai, China
Investigational Site Number : 150899
Shanghai, China
Investigational Site Number : 170004
Bogotá, Colombia
Investigational Site Number : 1910001
Zagreb, Croatia
Investigational Site Number : 1910002
Zagreb, Croatia
Investigational Site Number : 1910003
Zagreb, Croatia
Investigational Site Number : 150809
Prague, Czechia
Investigational Site Number : 151229
København Ø, Denmark
Investigational Site Number : 2140001
Santo Domingo, Dominican Republic
Investigational Site Number : 818007
Al Mansurah, Egypt
Investigational Site Number : 5748
Alexandria, Egypt
Investigational Site Number : 9889
Ash Sharqiyah, Egypt
Investigational Site Number : 9888
Asyut, Egypt
Investigational Site Number : 9829
Cairo, Egypt
Investigational Site Number : 8345
Cairo, Egypt
Investigational Site Number : 9830
Cairo, Egypt
Investigational Site Number : 250004
Besançon, France
Investigational Site Number : 250008
Bordeaux, France
Investigational Site Number : 250005
Brest, France
Investigational Site Number : 250014
Bron, France
Investigational Site Number : 250002
Caen, France
Investigational Site Number : 250001
Clichy, France
Investigational Site Number : 250003
Garches, France
Investigational Site Number : 250009
Lyon, France
Investigational Site Number : 250011
Marseille, France
Investigational Site Number : 2500013
Montpellier, France
Investigational Site Number : 250006
Nantes, France
Investigational Site Number : 250007
Paris, France
Investigational Site Number : 250010
Paris, France
Investigational Site Number : 250012
Rennes, France
Investigational Site Number : 250018
Strasbourg, France
Investigational Site Number : 250017
Toulouse, France
Investigational Site Number : 250016
Tours, France
Investigational Site Number : 151686
Berlin, Germany
Investigational Site Number : 150783
Düsseldorf, Germany
Investigational Site Number : 154150
Giessen, Germany
Investigational Site Number : 151369
Hamburg, Germany
Investigational Site Number : 151368
Hamburg, Germany
Investigational Site Number : 150031
Mainz, Germany
Investigational Site Number : 150432
Oberhausen, Germany
Investigational Site Number : 300002
Athens, Greece
Investigational Site Number : 300004
Athens, Greece
Investigational Site Number : 300003
Pátrai, Greece
Investigational Site Number : 300001
Thessaloniki, Greece
Investigational Site Number : 344001
Kowloon, Hong Kong
Investigational Site Number : 3480006
Budapest, Hungary
Investigational Site Number : 3480003
Létavértes, Hungary
Investigational Site Number : 3480007
Nyíregyháza, Hungary
Investigational Site Number : 3480008
Székesfehérvár, Hungary
Investigational Site Number : 356003
Ahmedabad, India
Investigational Site Number : 356004
Jaipur, India
Investigational Site Number : 356001
Kolkata, India
Investigational Site Number : 356005
Mumbai, India
Investigational Site Number : 3560006
Secunderabad, India
Investigational Site Number : 356002
Vellore, India
Investigational Site Number : 360001
Jakarta, Indonesia
Investigational Site Number : 3760003
Haifa, Israel
Investigational Site Number : 3760001
Jerusalem, Israel
Investigational Site Number : 3760002
Petah Tikva, Israel
Investigational Site Number : 380007
Rome, Roma, Italy
Investigational Site Number : 380014
Sassari, Sardinia, Italy
Investigational Site Number : 380008
Catania, Italy
Investigational Site Number : 380009
Florence, Italy
Investigational Site Number : 380006
Genova, Italy
Investigational Site Number : 380004
Milan, Italy
Investigational Site Number : 380005
Modena, Italy
Investigational Site Number : 380002
Monza, Italy
Investigational Site Number : 380011
Monza, Italy
Investigational Site Number : 380010
Naples, Italy
Investigational Site Number : 380003
Padova, Italy
Investigational Site Number : 380001
Udine, Italy
Investigational Site Number : 153205
Abeno-ku, Osaka, Japan
Investigational Site Number : 153203
Yonago-shi, Tottori, Japan
Investigational Site Number : 153217
Chiba, Japan
Investigational Site Number : 153204
Tokyo, Japan
Investigational Site Number : 4000001
Amman, Jordan
Investigational Site Number : 154225
Kuwait City, Kuwait
Investigational Site Number : 422001
Beirut, Lebanon
Investigational Site Number : 4220004
Beirut, Lebanon
Investigational Site Number : 154237
Vilnius, Lithuania
Investigational Site Number : 458002
Kuala Lumpur, Malaysia
Investigational Site Number : 458001
Kuala Pahang, Malaysia
Investigational Site Number : 150149
Amsterdam, Netherlands
Investigational Site Number : 151171
Amsterdam, Netherlands
Investigational Site Number : 154264
Karachi, Pakistan
Investigational Site Number : 154266
Lahore, Pakistan
Investigational Site Number : 604001
Arequipa, Peru
Investigational Site Number : 604002
Callao, Peru
Investigational Site Number : 608001
Manila, Philippines
Investigational Site Number : 150575
Warsaw, Poland
Investigational Site Number : 620003
Coimbra, Portugal
Investigational Site Number : 620004
Lisbon, Portugal
Investigational Site Number : 620009
Ponta Delgada, Portugal
Investigational Site Number : 642001
Cluj-Napoca, Romania
Investigational Site Number : 151188
Cluj-Napoca, Romania
Investigational Site Number : 642002
Cluj-Napoca, Romania
Investigational Site Number : 643001
Moscow, Russia
Investigational Site Number : 643002
Saint Petersburg, Russia
Investigational Site Number : 682002
Al Mubarraz, Saudi Arabia
Investigational Site Number : 682003
Jeddah, Saudi Arabia
Investigational Site Number : 682004
Mecca, Saudi Arabia
Investigational Site Number : 688001
Belgrade, Serbia
Investigational Site Number : 688002
Belgrade, Serbia
Investigational Site Number : 688003
Belgrade, Serbia
Investigational Site Number : 688005
Belgrade, Serbia
Investigational Site Number : 688004
Niš, Serbia
Investigational Site Number : 702001
Singapore, Singapore
Investigational Site Number : 703001
Bratislava, Slovakia
Investigational Site Number : 154138
Johannesburg, South Africa
Investigational Site Number : 710-003
Johannesburg, South Africa
Investigational Site Number : 150346
Sandton, South Africa
Investigational Site Number : 154208
Yangsan, Gyeongsangnam-do, South Korea
Investigational Site Number : 153180
Seoul, Seoul-teukbyeolsi, South Korea
Investigational Site Number : 153196
Seoul, Seoul-teukbyeolsi, South Korea
Investigational Site Number : 153191
Daejeon, South Korea
Investigational Site Number : 151149
Seoul, South Korea
Investigational Site Number : 153212
Seoul, South Korea
Investigational Site Number : 153222
Seoul, South Korea
Investigational Site Number : 154146
A Coruña, A Coruña [La Coruña], Spain
Investigational Site Number : 153237
Barcelona, Barcelona [Barcelona], Spain
Investigational Site Number : 154147
Barcelona, Barcelona [Barcelona], Spain
Investigational Site Number : 154119
Alcorcón, Madrid, Spain
Investigational Site Number : 153213
Vigo, Pontevedra [Pontevedra], Spain
Investigational Site Number : 153215
Seville, Sevilla, Spain
Investigational Site Number : 153219
Seville, Sevilla, Spain
Investigational Site Number : 154163
Madrid, Spain
Investigational Site Number : 154236
Madrid, Spain
Investigational Site Number : 151524
Madrid, Spain
Investigational Site Number : 153251
Madrid, Spain
Investigational Site Number : 154199
Madrid, Spain
Investigational Site Number : 154160
Madrid, Spain
Investigational Site Number : 154145
Sabadell, Spain
Investigational Site Number : 154205
Valencia, Spain
Investigational Site Number : 154238
Zaragoza, Spain
Investigational Site Number : 153216
Zaragoza, Spain
Investigational Site Number : 154095
Borås, Sweden
Investigational Site Number : 151726
Malmo, Sweden
Investigational Site Number : 154092
Norrköping, Sweden
Investigational Site Number : 157237
Aarau, Switzerland
Investigational Site Number : 157045
Bern, Switzerland
Investigational Site Number : 157244
Lausanne, Switzerland
Investigational Site Number : 157241
Zurich, Switzerland
Investigational Site Number : 151500
Chiayi City, Taiwan
Investigational Site Number : 154093
Chiayi City, Taiwan
Investigational Site Number : 152152
Hualien City, Taiwan
Investigational Site Number : 152244
Kaohsiung City, Taiwan
Investigational Site Number : 152246
Kaohsiung City, Taiwan
Investigational Site Number : 151534
New Taipei City, Taiwan
Investigational Site Number : 151181
Taichung, Taiwan
Investigational Site Number : 151179
Taichung, Taiwan
Investigational Site Number : 153248
Tainan, Taiwan
Investigational Site Number : 152153
Tainan, Taiwan
Investigational Site Number : 151182
Taipei, Taiwan
Investigational Site Number : 152321
Taipei, Taiwan
Investigational Site Number : 152226
Taipei, Taiwan
Investigational Site Number : 153158
Tao Yuan County, Taiwan
Investigational Site Number : 764003
Bangkok, Thailand
Investigational Site Number : 764004
Bangkok, Thailand
Investigational Site Number : 764001
Bangkok, Thailand
Investigational Site Number : 764005
Khon Kaen, Thailand
Investigational Site Number : 792006
Adana, Turkey (Türkiye)
Investigational Site Number : 792005
Ankara, Turkey (Türkiye)
Investigational Site Number : 792001
Ankara, Turkey (Türkiye)
Investigational Site Number : 792002
Ankara, Turkey (Türkiye)
Investigational Site Number : 792004
Istanbul, Turkey (Türkiye)
Investigational Site Number : 792007
Izmir, Turkey (Türkiye)
Investigational Site Number : 792003
Malatya, Turkey (Türkiye)
Investigational Site Number : 7840001
Dubai, United Arab Emirates
Investigational Site Number : 151340
Cambridge, Cambridgeshire, United Kingdom
Investigational Site Number : 152287
Birmingham, England, United Kingdom
Investigational Site Number : 152361
Salford, Manchester, United Kingdom
Investigational Site Number : 154240
Birmingham, United Kingdom
Investigational Site Number : 151123
London, United Kingdom
Investigational Site Number : 151646
London, United Kingdom
Investigational Site Number : 150303
London, United Kingdom
Investigational Site Number : 150455
Manchester, United Kingdom
Investigational Site Number : 154212
Hanoi, Vietnam
Investigational Site Number : 704002
Ho Chi Minh City, Vietnam