International Collaborative Gaucher Group (ICGG) Gaucher Disease Registry & Pregnancy Sub-registry
Gaucher Disease Registry Protocol
3 other identifiers
observational
12,000
51 countries
313
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 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.
Trial Health
Trial Health Score
Automated assessment based on enrollment pace, timeline, and geographic reach
participants targeted
Target at P75+ for all trials
Started Apr 1991
Longer than P75 for all trials
313 active sites
Health score is calculated from publicly available data and should be used for screening purposes only.
Trial Relationships
Click on a node to explore related trials.
Study Timeline
Key milestones and dates
Study Start
First participant enrolled
April 1, 1991
CompletedFirst Submitted
Initial submission to the registry
July 12, 2006
CompletedFirst Posted
Study publicly available on registry
August 1, 2006
CompletedPrimary Completion
Last participant's last visit for primary outcome
January 31, 2034
ExpectedStudy Completion
Last participant's last visit for all outcomes
January 31, 2034
April 14, 2026
April 1, 2026
42.9 years
July 12, 2006
April 13, 2026
Conditions
Keywords
Outcome Measures
Primary Outcomes (2)
ICGG Gaucher Registry: To provide the Gaucher medical community with recommendations for monitoring patients and to provide reports on patient outcomes to help optimize patient care
42 years
Gaucher Pregnancy Sub-registry: 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, such as ERT with imiglucerase
42 years
Study Arms (2)
Patients in ICGG Gaucher Registry
No experimental intervention is given. A patient with Gaucher Disease will undergo clinical assessments and receive standard of care treatment as determined by the patient's physician.
Pregnant women with confirmed diagnosis of Gaucher disease
No experimental intervention is given. Pregnant women with confirmed diagnosis of Gaucher disease who are participating in the ICGG Gaucher Registry and consented to participate in the Gaucher Pregnancy Sub-registry, regardless of whether she is receiving disease-specific therapy and irrespective of the commercial product with which she may be treated.
Eligibility Criteria
All patients with a confirmed diagnosis of Gaucher disease are eligible for inclusion in the ICGG Gaucher Registry. For Gaucher Pregnancy Sub-registry: It is recommended that pregnancy data be collected on all eligible women regardless of infant enrollment. In the event of patients having multiple pregnancies, data collection for each individual pregnancy is encouraged for all women enrolled in this Sub-registry.
You may qualify if:
- ICGG Gaucher Registry
- 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.
Contact the study team to confirm eligibility.
Sponsors & Collaborators
Study Sites (318)
Phoenix Children's Hospital- Site Number : 840003
Phoenix, Arizona, 85016, United States
University of Arizona- Site Number : 840015
Tucson, Arizona, 85724, United States
Arkansas Children's Hospital- Site Number : 840109
Little Rock, Arkansas, 72202, United States
University of Arkansas for Medical Sciences- Site Number : 840113
Little Rock, Arkansas, 72205, United States
Tower Hematology Oncology Medical Group- Site Number : 840056
Beverly Hills, California, 90211, United States
University of California at Irvine- Site Number : 840036
Irvine, California, 92617, United States
Southern California Permanente Medical Group- Site Number : 840108
Los Angeles, California, 90027, United States
USC Health Sciences Center Dept of Genetics- Site Number : 840082
Los Angeles, California, 90033, United States
Children's Hospital of Orange County- Site Number : 840074
Orange, California, 92868, United States
UC Davis MIND Institute- Site Number : 840010
Sacramento, California, 95817, United States
Kaiser Permanente Sacramento Medical Center- Site Number : 840042
Sacramento, California, 95825, United States
University of California at San Diego- Site Number : 840007
San Diego, California, 92093, United States
University of California San Francisco - Parnassus Campus- Site Number : 840051
San Francisco, California, 94143, United States
Stanford University Medical Center- Site Number : 840022
Stanford, California, 94305, United States
Yale University School of Medicine- Site Number : 840047
New Haven, Connecticut, 06510, United States
Children's National Medical Center - Washington- Site Number : 840067
Washington D.C., District of Columbia, 20010, United States
Investigational Site Number : 250012
Washington D.C., District of Columbia, 20037-3201, United States
University Hematology Oncology- Site Number : 840075
Coral Springs, Florida, 33065, United States
University of Florida Pediatrics Genetics- Site Number : 840121
Jacksonville, Florida, 32207, United States
The Atwal Clinic- Site Number : 840112
Jacksonville, Florida, 32216, United States
University Of Miami SOM- Site Number : 840006
Miami, Florida, 33136, United States
University of Florida-Genetics- Site Number : 840096
Tampa, Florida, 33606, United States
Pediatric Endocrine Associates- Site Number : 840017
Tampa, Florida, 33612, United States
Emory University School of Medicine- Human Genetics- Site Number : 840060
Decatur, Georgia, 30033, United States
University of Colorado at Denver Genetics- Site Number : 840068
Aurora, Illinois, 80045, United States
Ann & Robert H. Lurie Children's Hospital of Chicago- Site Number : 840011
Chicago, Illinois, 60611, United States
Ann & Robert H. Lurie Children's Hospital of Chicago- Site Number : 840013
Chicago, Illinois, 60611, United States
Rush University Medical Center Genetics- Site Number : 840079
Chicago, Illinois, 60612, United States
Indianapolis University School of Medicine- Site Number : 840027
Indianapolis, Indiana, 46202, United States
University of Iowa- Site Number : 840032
Iowa City, Iowa, 52242, United States
University of Louisville - Health Sciences Center- Site Number : 840030
Louisville, Kentucky, 40202, United States
Tulane University School of Medicine- Site Number : 840001
New Orleans, Louisiana, 70112, United States
Maine Medical Partners Pediatric Specialty Care- Site Number : 840064
Portland, Maine, 04102, United States
John Hopkins- Site Number : 840044
Baltimore, Maryland, 21205, United States
Massachusetts General Hospital-Genetics- Site Number : 840062
Boston, Massachusetts, 02114, United States
Boston Children's Hospital - PIN- Site Number : 840092
Boston, Massachusetts, 02115, United States
University of Michigan Pediatrics- Site Number : 840107
Ann Arbor, Michigan, 48109, United States
Children's Hospital of Michigan- Site Number : 840066
Detroit, Michigan, 48201, United States
Spectrum for Health- Site Number : 840019
Grand Rapids, Michigan, 49503, United States
Infusion Associates - Grand Rapids- Site Number : 840050
Grand Rapids, Michigan, 49525, United States
Children's Hospitals and Clinics of Minnesota- Site Number : 840046
Minneapolis, Minnesota, 55404, United States
Children's Hospitals and Clinics of Minnesota- Site Number : 840114
Minneapolis, Minnesota, 55404, United States
University of Minnesota Medical Center Pediatrics- Site Number : 840076
Minneapolis, Minnesota, 55455, United States
University of Missouri Health System Department of Genetics- Site Number : 840031
Columbia, Missouri, 65212, United States
Children's Mercy Adelle Hall Campus- Site Number : 840063
Kansas City, Missouri, 64108, United States
Washington University- Site Number : 840100
St Louis, Missouri, 63110, United States
University of Nebraska Medical Center- Site Number : 840084
Omaha, Nebraska, 68198, United States
Children's Specialty Center - Las Vegas- Site Number : 840008
Las Vegas, Nevada, 89109, United States
Cooper Health Center- Site Number : 840098
Camden, New Jersey, 08103, United States
Joseph M. Sanzari Children's Hospital- Site Number : 840101
Hackensack, New Jersey, 07601, United States
Atlantic Health System- Site Number : 840099
Morristown, New Jersey, 07962, United States
Saint Peter's University Hospital - New Brunswick- Site Number : 840016
New Brunswick, New Jersey, 08901, United States
St. Joseph's Children's Hospital- Site Number : 840057
Paterson, New Jersey, 07503, United States
Northwell Health - Site Number : 840102
Manhasset, New York, 11030, United States
New York University School Of Medicine- Site Number : 840040
New York, New York, 10016, United States
Metropolitan Hospital Center- Site Number : 840110
New York, New York, 10029, United States
Mt. Sinai School of Medicine- Site Number : 840005
New York, New York, 10029, United States
Columbia University Irving Medical Center- Site Number : 840125
New York, New York, 10032, United States
University of Rochester Medical Center- Site Number : 840105
Rochester, New York, 14642, United States
State University of New York- Site Number : 840052
Syracuse, New York, 13210, United States
New York Medical College- Site Number : 840039
Valhalla, New York, 10595, United States
Carolinas Medical Center Hospital- Site Number : 840065
Charlotte, North Carolina, 28232, United States
Duke University Medical Center Genetics Dept- Site Number : 840037
Durham, North Carolina, 27710, United States
Cincinnati Children's Hospital Medical Center- Site Number : 840026
Cincinnati, Ohio, 45229, United States
University Hospitals Cleveland Medical Center- Site Number : 840119
Cleveland, Ohio, 44106, United States
Cleveland Clinic - Cleveland- Site Number : 840048
Cleveland, Ohio, 44195, United States
Nationwide Children's Hospital- Site Number : 840091
Columbus, Ohio, 43205, United States
LSD Data Registry Site LLC- Site Number : 840094
Dublin, Ohio, 43017, United States
Oregon Health & Science University (OHSU)- Site Number : 840080
Portland, Oregon, 97239, United States
Penn State Health Milton South Hershey Medical Center- Site Number : 840126
Hershey, Pennsylvania, 17033, United States
Children's Hospital of Philadelphia HUP Medical Genetics- Site Number : 840089
Philadelphia, Pennsylvania, 19104, United States
Children's Hospital of Philadelphia- Site Number : 840034
Philadelphia, Pennsylvania, 19104, United States
UPMC Children's Hospital of Pittsburgh- Site Number : 840023
Pittsburgh, Pennsylvania, 15224, United States
Rhode Island Hospital Genetics- Site Number : 840053
Providence, Rhode Island, 02903, United States
Greenwood Genetic Center - Greenville- Site Number : 840055
Greenville, South Carolina, 29605, United States
Vanderbilt University Medical Center Diagnostic Lab- Site Number : 840049
Nashville, Tennessee, 37212, United States
Baylor Institute of Metabolic Disease- Site Number : 840058
Dallas, Texas, 75226, United States
Cook Children's Health Care System- Site Number : 840024
Fort Worth, Texas, 76104, United States
University of Utah Department of Medical Genetics- Site Number : 840043
Salt Lake City, Utah, 84132, United States
University of Virginia School of Medicine-Pediatrics- Site Number : 840078
Charlottesville, Virginia, 22908, United States
O & O Alpan- Site Number : 840025
Fairfax, Virginia, 22030, United States
Children's Hospital of The King's Daughters- Site Number : 840072
Norfolk, Virginia, 23507, United States
Seattle Children's Hospital- Site Number : 840028
Seattle, Washington, 98105, United States
University Of Washington Medical Center- Site Number : 840059
Seattle, Washington, 98195, United States
Mary Bridge Children's Hospital & Health Center- Site Number : 840115
Tacoma, Washington, 98405, United States
Children's Hospital of Wisconsin-Pediatrics- Site Number : 840054
Milwaukee, Wisconsin, 53226, United States
Investigational Site Number : 032003
La Plata, Buenos Aires, 1900, Argentina
Investigational Site Number : 150661
Munro, Buenos Aires, 1605, Argentina
Investigational Site Number : 151085
Sarandí, Buenos Aires, 1123, Argentina
Investigational Site Number : 604002
Buenos Aires, 1107, Argentina
Investigational Site Number : 032012
Buenos Aires, 1425, Argentina
Investigational Site Number : 032014
Buenos Aires, 1428, Argentina
Investigational Site Number : 154176
Corrientes, 3400, Argentina
Investigational Site Number : 032011
Córdoba, 5004, Argentina
Investigational Site Number : 151431
Sydney, New South Wales, 2050, Australia
Investigational Site Number : 151069
Westmead, New South Wales, 2145, Australia
Investigational Site Number : 151010
Brisbane, Queensland, 4029, Australia
Investigational Site Number : 151491
Townsville, Queensland, 4814, Australia
Investigational Site Number : 151002
Adelaide, South Australia, 5000, Australia
Investigational Site Number : 151725
Hobart, Tasmania, 7000, Australia
Investigational Site Number : 151011
Clayton, Victoria, 3168, Australia
Investigational Site Number : 151008
Parkville, Victoria, 3050, Australia
Investigational Site Number : 151015
Murdoch, Western Australia, 6150, Australia
Investigational Site Number : 150722
Antwerp, 2020, Belgium
Investigational Site Number : 151156
Bruges, 8000, Belgium
Investigational Site Number : 151796
Brussels, 1020, Belgium
Investigational Site Number : 150944
Brussels, 1090, Belgium
Investigational Site Number : 152345
Brussels, 1090, Belgium
Investigational Site Number : 150517
Brussels, 1200, Belgium
Investigational Site Number : 154285
Edegem, 2650, Belgium
Investigational Site Number : 151134
Ghent, 9000, Belgium
Investigational Site Number : 151668
Leuven, 3000, Belgium
Universidade Estadual de Ciencias da Saude de Alagoas- Site Number : 076005
Maceió, Alagoas, 57010-300, Brazil
Hospital de Clinicas da Universidade Federal do Parana- Site Number : 076010
Curitiba, Paraná, 80060-900, Brazil
Hospital de Clinicas de Porto Alegre- Site Number : 076007
Porto Alegre, Rio Grande do Sul, 90035-903, Brazil
Hospital e Maternidade Celso Pierro - PUC-Campinas- Site Number : 076012
Campinas, São Paulo, 13034-685, Brazil
Hospital das Clinicas da Faculdade de Medicina de Ribeirao Preto- Site Number : 076001
Ribeirão Preto, São Paulo, 14049-900, Brazil
HEMORIO- Site Number : 076006
Rio de Janeiro, 20211-030, Brazil
Instituto de Genética e Erros Inatos do Metabolismo- Site Number : 076002
São Paulo, 04020-041, Brazil
Hospital das Clinicas da Faculdade de Medicina da Universidade de Sao Paulo- Site Number : 076008
São Paulo, 05403-000, Brazil
Investigational Site Number : 100001
Sofia, 1680, Bulgaria
Investigational Site Number : 151164
Sofia, Bulgaria
Investigational Site Number : 124014
Calgary, Alberta, T2E 7Z4, Canada
Investigational Site Number : 124002
Edmonton, Alberta, T6G 2B7, Canada
Investigational Site Number : 124010
Vancouver, British Columbia, V5Z 1M9, Canada
Investigational Site Number : 124011
Vancouver, British Columbia, V6H 3N1, Canada
Investigational Site Number : 124019
Winnipeg, Manitoba, R3A 1R9, Canada
Investigational Site Number : 124022
Moncton, New Brunswick, E1C 2Z3, Canada
Investigational Site Number : 124024
Kingston, Ontario, K7L 2V7, Canada
Investigational Site Number : 124005
Kingston, Ontario, K7L 4X3, Canada
Investigational Site Number : 124021
London, Ontario, N6A 5A5, Canada
Investigational Site Number : 124006
Toronto, Ontario, M5G 1X8, Canada
Investigational Site Number : 124013
Toronto, Ontario, M5G1X5, Canada
Investigational Site Number : 124001
Sherbrooke, Quebec, J1K 2R1, Canada
Investigational Site Number : 1560001
Beijing, 100045, China
Investigational Site Number : 156003
Beijing, 100730, China
Investigational Site Number : 152357
Guangzhou, 510080, China
Investigational Site Number : 1560002
Guangzhou, 510080, China
Investigational Site Number : 152358
Hangzhou, 310003, China
Investigational Site Number : 152359
Hangzhou, China
Investigational Site Number : 157252
Nanjing, 210008, China
Investigational Site Number : 150899
Shanghai, 200040, China
Investigational Site Number : 151787
Shanghai, 200040, China
Investigational Site Number : 152356
Shanghai, 200092, China
Investigational Site Number : 170004
Bogotá, Colombia
Investigational Site Number : 1910001
Zagreb, 10000, Croatia
Investigational Site Number : 1910002
Zagreb, 10000, Croatia
Investigational Site Number : 1910003
Zagreb, 10000, Croatia
Investigational Site Number : 150809
Prague, 12808, Czechia
Investigational Site Number : 151229
Copenhagen, 2100, Denmark
Investigational Site Number : 2140001
Santo Domingo, 10101, 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 : 8345
Cairo, 11432, Egypt
Investigational Site Number : 9829
Cairo, 11566, Egypt
Investigational Site Number : 9830
Cairo, Egypt
Investigational Site Number : 250004
Besançon, 25000, France
Investigational Site Number : 250008
Bordeaux, 33000, France
Investigational Site Number : 250005
Brest, 29200, France
Investigational Site Number : 250014
Bron, 69677, France
Investigational Site Number : 250002
Caen, 14033, France
Investigational Site Number : 250001
Clichy, 92110, France
Investigational Site Number : 250003
Garches, 92380, France
Investigational Site Number : 250009
Lyon, 69003, France
Investigational Site Number : 250011
Marseille, 13008, France
Investigational Site Number : 2500013
Montpellier, 34295, France
Investigational Site Number : 250006
Nantes, 44093, France
Investigational Site Number : 250007
Paris, 75013, France
Investigational Site Number : 250010
Paris, 75015, France
Investigational Site Number : 250018
Strasbourg, 67000, France
Investigational Site Number : 250017
Toulouse, 31027, France
Investigational Site Number : 250016
Tours, 37032, France
Investigational Site Number : 151686
Berlin, 13353, Germany
Investigational Site Number : 150783
Düsseldorf, 40225, Germany
Investigational Site Number : 154150
Giessen, 35392, Germany
Investigational Site Number : 151369
Hamburg, 20099, Germany
Investigational Site Number : 151368
Hamburg, 20246, Germany
Investigational Site Number : 150031
Mainz, 55131, Germany
Investigational Site Number : 150432
Oberhausen, 46045, Germany
Investigational Site Number : 300002
Athens, 115 27, Greece
Investigational Site Number : 300004
Athens, Greece
Investigational Site Number : 300003
Pátrai, 26500, Greece
Investigational Site Number : 300001
Thessaloniki, 546 42, Greece
Investigational Site Number : 344001
Kowloon, Hong Kong
Investigational Site Number : 3480006
Budapest, H-1097, Hungary
Investigational Site Number : 3480003
Létavértes, 4281, Hungary
Investigational Site Number : 3480007
Nyiregyháza, 4400, Hungary
Investigational Site Number : 3480008
Székesfehérvár, 8000, Hungary
Investigational Site Number : 356003
Ahmedabad, 380015, India
Investigational Site Number : 356004
Jaipur, 302015, India
Investigational Site Number : 356001
Kolkata, 700017, India
Investigational Site Number : 356005
Mumbai, 400025, India
Investigational Site Number : 3560006
Secunderabad, 500026, India
Investigational Site Number : 356002
Vellore, 632004, 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 : 380009
Florence, Firenze, 50134, Italy
Investigational Site Number : 380004
Milan, Milano, 20122, Italy
Investigational Site Number : 380005
Baggiovara, Modena, 41126, Italy
Investigational Site Number : 380002
Monza, Monza E Brianza, 20052, Italy
Investigational Site Number : 380007
Rome, Roma, 00161, Italy
Investigational Site Number : 380014
Sassari, Sardinia, 07100, Italy
Investigational Site Number : 380008
Catania, 95100, Italy
Investigational Site Number : 380006
Genova, 16147, Italy
Investigational Site Number : 380011
Monza, Italy
Investigational Site Number : 380010
Naples, Italy
Investigational Site Number : 380003
Padova, 35128, Italy
Investigational Site Number : 380001
Udine, 33100, Italy
Investigational Site Number : 153203
Yonago, Tottori, 683-8504, Japan
Investigational Site Number : 153217
Chiba, 266-0007, Japan
Investigational Site Number : 153205
Osaka, 545-8586, Japan
Investigational Site Number : 153204
Tokyo, 157-8535, Japan
Investigational Site Number : 4000001
Amman, 261, Jordan
Investigational Site Number : 154225
Kuwait City, Kuwait
Investigational Site Number : 422001
Beirut, 166830, Lebanon
Investigational Site Number : 4220004
Beirut, Lebanon
Investigational Site Number : 154237
Vilnius, 08661, Lithuania
Investigational Site Number : 458001
Kuala Lumpur, 50586, Malaysia
Investigational Site Number : 458002
Kuala Lumpur, 59100, 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 : 608001
City of Muntinlupa, 1000, Philippines
Investigational Site Number : 150575
Warsaw, 04-730, Poland
Investigational Site Number : 620003
Coimbra, 3040-081, Portugal
Investigational Site Number : 620004
Lisbon, 1649-035, Portugal
Investigational Site Number : 620009
Ponta Delgada, 9500-370, Portugal
Investigational Site Number : 151188
Cluj-Napoca, 400006, Romania
Investigational Site Number : 642001
Cluj-Napoca, 400006, Romania
Investigational Site Number : 642002
Cluj-Napoca, 400006, Romania
Investigational Site Number : 643001
Moscow, Russia
Investigational Site Number : 643002
Saint Petersburg, Russia
Investigational Site Number : 682002
Al-Hasa, 31982, Saudi Arabia
Investigational Site Number : 682003
Jeddah, Saudi Arabia
Investigational Site Number : 682004
Mecca, 24246, Saudi Arabia
Investigational Site Number : 688001
Belgrade, 11000, Serbia
Investigational Site Number : 688002
Belgrade, 11000, Serbia
Investigational Site Number : 688005
Belgrade, 11000, Serbia
Investigational Site Number : 688003
Belgrade, 11080, Serbia
Investigational Site Number : 688004
Niš, 18000, Serbia
Investigational Site Number : 702001
Singapore, 229899, Singapore
Investigational Site Number : 703001
Bratislava, 833 40, Slovakia
Investigational Site Number : 154138
Durban, 4001, South Africa
Investigational Site Number : 150346
Johannesburg, 2057, South Africa
Investigational Site Number : 710-003
Johannesburg, South Africa
Investigational Site Number : 154208
Yangsan, Gyeongsangnam-do, 50612, South Korea
Investigational Site Number : 153180
Seoul, Seoul-teukbyeolsi, 03080, South Korea
Investigational Site Number : 153196
Seoul, Seoul-teukbyeolsi, 03080, South Korea
Investigational Site Number : 151149
Seoul, Seoul-teukbyeolsi, 05505, South Korea
Investigational Site Number : 153222
Seoul, Seoul-teukbyeolsi, 06973, South Korea
Investigational Site Number : 153191
Daejeon, South Korea
Investigational Site Number : 153212
Seoul, South Korea
Investigational Site Number : 154146
A Coruña, A Coruña [La Coruña], 15006, Spain
Investigational Site Number : 153237
Barcelona, Barcelona [Barcelona], 08035, Spain
Investigational Site Number : 154147
Barcelona, Barcelona [Barcelona], 08035, Spain
Investigational Site Number : 154119
Alcorcón, Madrid, 28922, Spain
Investigational Site Number : 153213
Vigo, Pontevedra [Pontevedra], 36200, Spain
Investigational Site Number : 153215
Seville, Sevilla, 41013, Spain
Investigational Site Number : 153219
Seville, Sevilla, 41013, Spain
Investigational Site Number : 154163
Madrid, 28007, Spain
Investigational Site Number : 154236
Madrid, 28007, Spain
Investigational Site Number : 151524
Madrid, 28034, Spain
Investigational Site Number : 153251
Madrid, 28040, Spain
Investigational Site Number : 154199
Madrid, 28041, Spain
Investigational Site Number : 154160
Madrid, 28046, Spain
Investigational Site Number : 154145
Sabadell, 08208, Spain
Investigational Site Number : 154205
Valencia, 46026, Spain
Investigational Site Number : 154238
Zaragoza, 50006, Spain
Investigational Site Number : 153216
Zaragoza, 50009, Spain
Investigational Site Number : 154095
Borås, 501 82, Sweden
Investigational Site Number : 151726
Malmo, 205 02, Sweden
Investigational Site Number : 154092
Norrköping, 601 82, Sweden
Investigational Site Number : 157237
Aarau, 5001, Switzerland
Investigational Site Number : 157045
Bern, 3010, Switzerland
Investigational Site Number : 157244
Lausanne, 1011, Switzerland
Investigational Site Number : 157241
Zurich, 8057, Switzerland
Investigational Site Number : 151500
Chiayi City, Taiwan
Investigational Site Number : 154093
Chiayi City, Taiwan
Investigational Site Number : 152152
Hualien City, 970, Taiwan
Investigational Site Number : 152244
Kaohsiung City, 807, Taiwan
Investigational Site Number : 152246
Kaohsiung City, 833, Taiwan
Investigational Site Number : 151534
New Taipei City, 231, Taiwan
Investigational Site Number : 151179
Taichung, 404, Taiwan
Investigational Site Number : 151181
Taichung, 411, Taiwan
Investigational Site Number : 153248
Tainan, 704, Taiwan
Investigational Site Number : 152153
Tainan, 710, Taiwan
Investigational Site Number : 151182
Taipei, 100, Taiwan
Investigational Site Number : 152321
Taipei, 104, Taiwan
Investigational Site Number : 152226
Taipei, 112, Taiwan
Investigational Site Number : 153158
Tao Yuan County, 333, Taiwan
Investigational Site Number : 764003
Bangkok, 10400, Thailand
Investigational Site Number : 764004
Bangkok, 10700, Thailand
Investigational Site Number : 764001
Bangkok, Thailand
Investigational Site Number : 764005
Khon Kaen, 40002, Thailand
Investigational Site Number : 792006
Adana, 01330, Turkey (Türkiye)
Investigational Site Number : 792002
Ankara, 06230, Turkey (Türkiye)
Investigational Site Number : 792005
Ankara, 06620, Turkey (Türkiye)
Investigational Site Number : 792001
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, CB2 2QQ, United Kingdom
Investigational Site Number : 152287
Birmingham, England, B15 2TH, United Kingdom
Investigational Site Number : 154240
Birmingham, England, B4 6NH, United Kingdom
Investigational Site Number : 151123
London, England, NW3 2QG, United Kingdom
Investigational Site Number : 151646
London, London, City of, WC1N 3BG, United Kingdom
Investigational Site Number : 150303
London, London, City of, WC1N 3JH, United Kingdom
Investigational Site Number : 152361
Salford, Manchester, M6 8HD, United Kingdom
Investigational Site Number : 150455
Manchester, M13 9WL, United Kingdom
Investigational Site Number : 154212
Hanoi, Vietnam
Investigational Site Number : 704002
Ho Chi Minh City, 70000, Vietnam
Related Publications (8)
El-Beshlawy A, Tylki-Szymanska A, Vellodi A, Belmatoug N, Grabowski GA, Kolodny EH, Batista JL, Cox GF, Mistry PK. Long-term hematological, visceral, and growth outcomes in children with Gaucher disease type 3 treated with imiglucerase in the International Collaborative Gaucher Group Gaucher Registry. Mol Genet Metab. 2017 Jan-Feb;120(1-2):47-56. doi: 10.1016/j.ymgme.2016.12.001. Epub 2016 Dec 6.
PMID: 28040394BACKGROUNDMistry PK, Batista JL, Andersson HC, Balwani M, Burrow TA, Charrow J, Kaplan P, Khan A, Kishnani PS, Kolodny EH, Rosenbloom B, Scott CR, Weinreb N. Transformation in pretreatment manifestations of Gaucher disease type 1 during two decades of alglucerase/imiglucerase enzyme replacement therapy in the International Collaborative Gaucher Group (ICGG) Gaucher Registry. Am J Hematol. 2017 Sep;92(9):929-939. doi: 10.1002/ajh.24801. Epub 2017 Jul 7.
PMID: 28569047BACKGROUNDWeinreb NJ, Goldblatt J, Villalobos J, Charrow J, Cole JA, Kerstenetzky M, vom Dahl S, Hollak C. Long-term clinical outcomes in type 1 Gaucher disease following 10 years of imiglucerase treatment. J Inherit Metab Dis. 2013 May;36(3):543-53. doi: 10.1007/s10545-012-9528-4. Epub 2012 Sep 14.
PMID: 22976765BACKGROUNDAin NU, Vaishnaw M, Mistry PK. Natural-History Mapping of Lysosomal Storage Disorders (LSDs): Gaucher Disease as a Model for Precision Care. J Inherit Metab Dis. 2026 Jan;49(1):e70128. doi: 10.1002/jimd.70128.
PMID: 41527340DERIVEDRosenbloom BE, Cappellini MD, Weinreb NJ, Dragosky M, Revel-Vilk S, Batista JL, Sekulic D, Mistry PK. Cancer risk and gammopathies in 2123 adults with Gaucher disease type 1 in the International Gaucher Group Gaucher Registry. Am J Hematol. 2022 Oct;97(10):1337-1347. doi: 10.1002/ajh.26675. Epub 2022 Aug 24.
PMID: 36054609DERIVEDWeinreb NJ, Camelo JS Jr, Charrow J, McClain MR, Mistry P, Belmatoug N; International Collaborative Gaucher Group (ICGG) Gaucher Registry (NCT00358943) investigators. Gaucher disease type 1 patients from the ICGG Gaucher Registry sustain initial clinical improvements during twenty years of imiglucerase treatment. Mol Genet Metab. 2021 Feb;132(2):100-111. doi: 10.1016/j.ymgme.2020.12.295. Epub 2021 Jan 8.
PMID: 33485799DERIVEDWeinreb NJ, Kaplan P. The history and accomplishments of the ICGG Gaucher registry. Am J Hematol. 2015 Jul;90 Suppl 1:S2-5. doi: 10.1002/ajh.24054. No abstract available.
PMID: 26096743DERIVEDBuyers RP, Collin-Histed T. Foreword. Am J Hematol. 2015 Jul;90 Suppl 1:S1. doi: 10.1002/ajh.24053. No abstract available.
PMID: 26096740DERIVED
MeSH Terms
Conditions
Condition Hierarchy (Ancestors)
Study Officials
- STUDY DIRECTOR
Study Director
Genzyme, a Sanofi Company
Central Study Contacts
Trial Transparency email recommended (Toll free number for US & Canada)
CONTACT
Study Design
- Study Type
- observational
- Observational Model
- COHORT
- Time Perspective
- PROSPECTIVE
- Target Duration
- 12 Months
- Sponsor Type
- INDUSTRY
- Responsible Party
- SPONSOR
Study Record Dates
First Submitted
July 12, 2006
First Posted
August 1, 2006
Study Start
April 1, 1991
Primary Completion (Estimated)
January 31, 2034
Study Completion (Estimated)
January 31, 2034
Last Updated
April 14, 2026
Record last verified: 2026-04