International Collaborative Gaucher Group (ICGG) Gaucher Disease Registry & Pregnancy Sub-registry
April 13, 2026 updated by: Genzyme, a Sanofi Company
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.
Study Overview
Status
Recruiting
Study Type
Observational
Enrollment (Estimated)
12000
Contacts and Locations
This section provides the contact details for those conducting the study, and information on where this study is being conducted.
Study Contact
- Name: ICGG Gaucher Registry HelpLine
- Phone Number: +1(617) 252-7500
Study Contact Backup
- Name: Trial Transparency email recommended (Toll free number for US & Canada)
- Phone Number: option 6 800-633-1610
- Email: Contact-US@sanofi.com
Study Locations
-
-
-
Buenos Aires, Argentina, 1425
- Completed
- Investigational Site Number : 032012
-
Buenos Aires, Argentina, 1107
- Recruiting
- Investigational Site Number : 604002
-
Buenos Aires, Argentina, 1428
- Recruiting
- Investigational Site Number : 032014
-
Corrientes, Argentina, 3400
- Completed
- Investigational Site Number : 154176
-
Córdoba, Argentina, 5004
- Completed
- Investigational Site Number : 032011
-
-
Buenos Aires
-
La Plata, Buenos Aires, Argentina, 1900
- Completed
- Investigational Site Number : 032003
-
Munro, Buenos Aires, Argentina, 1605
- Recruiting
- Investigational Site Number : 150661
-
Sarandí, Buenos Aires, Argentina, 1123
- Completed
- Investigational Site Number : 151085
-
-
-
-
New South Wales
-
Sydney, New South Wales, Australia, 2050
- Terminated
- Investigational Site Number : 151431
-
Westmead, New South Wales, Australia, 2145
- Recruiting
- Investigational Site Number : 151069
-
-
Queensland
-
Brisbane, Queensland, Australia, 4029
- Completed
- Investigational Site Number : 151010
-
Townsville, Queensland, Australia, 4814
- Completed
- Investigational Site Number : 151491
-
-
South Australia
-
Adelaide, South Australia, Australia, 5000
- Recruiting
- Investigational Site Number : 151002
-
-
Tasmania
-
Hobart, Tasmania, Australia, 7000
- Recruiting
- Investigational Site Number : 151725
-
-
Victoria
-
Clayton, Victoria, Australia, 3168
- Recruiting
- Investigational Site Number : 151011
-
Parkville, Victoria, Australia, 3050
- Recruiting
- Investigational Site Number : 151008
-
-
Western Australia
-
Murdoch, Western Australia, Australia, 6150
- Recruiting
- Investigational Site Number : 151015
-
-
-
-
-
Antwerp, Belgium, 2020
- Recruiting
- Investigational Site Number : 150722
-
Bruges, Belgium, 8000
- Terminated
- Investigational Site Number : 151156
-
Brussels, Belgium, 1090
- Recruiting
- Investigational Site Number : 150944
-
Brussels, Belgium, 1090
- Recruiting
- Investigational Site Number : 152345
-
Brussels, Belgium, 1200
- Recruiting
- Investigational Site Number : 150517
-
Brussels, Belgium, 1020
- Recruiting
- Investigational Site Number : 151796
-
Edegem, Belgium, 2650
- Recruiting
- Investigational Site Number : 154285
-
Ghent, Belgium, 9000
- Completed
- Investigational Site Number : 151134
-
Leuven, Belgium, 3000
- Recruiting
- Investigational Site Number : 151668
-
-
-
-
-
Rio de Janeiro, Brazil, 20211-030
- Recruiting
- HEMORIO- Site Number : 076006
-
São Paulo, Brazil, 04020-041
- Recruiting
- Instituto de Genética e Erros Inatos do Metabolismo- Site Number : 076002
-
São Paulo, Brazil, 05403-000
- Completed
- Hospital das Clinicas da Faculdade de Medicina da Universidade de Sao Paulo- Site Number : 076008
-
-
Alagoas
-
Maceió, Alagoas, Brazil, 57010-300
- Recruiting
- Universidade Estadual de Ciencias da Saude de Alagoas- Site Number : 076005
-
-
Paraná
-
Curitiba, Paraná, Brazil, 80060-900
- Recruiting
- Hospital de Clinicas da Universidade Federal do Parana- Site Number : 076010
-
-
Rio Grande do Sul
-
Porto Alegre, Rio Grande do Sul, Brazil, 90035-903
- Recruiting
- Hospital de Clinicas de Porto Alegre- Site Number : 076007
-
-
São Paulo
-
Campinas, São Paulo, Brazil, 13034-685
- Recruiting
- Hospital e Maternidade Celso Pierro - PUC-Campinas- Site Number : 076012
-
Ribeirão Preto, São Paulo, Brazil, 14049-900
- Recruiting
- Hospital das Clinicas da Faculdade de Medicina de Ribeirao Preto- Site Number : 076001
-
-
-
-
-
Sofia, Bulgaria, 1680
- Recruiting
- Investigational Site Number : 100001
-
Sofia, Bulgaria
- Recruiting
- Investigational Site Number : 151164
-
-
-
-
Alberta
-
Calgary, Alberta, Canada, T2E 7Z4
- Recruiting
- Investigational Site Number : 124014
-
Edmonton, Alberta, Canada, T6G 2B7
- Recruiting
- Investigational Site Number : 124002
-
-
British Columbia
-
Vancouver, British Columbia, Canada, V5Z 1M9
- Recruiting
- Investigational Site Number : 124010
-
Vancouver, British Columbia, Canada, V6H 3N1
- Completed
- Investigational Site Number : 124011
-
-
Manitoba
-
Winnipeg, Manitoba, Canada, R3A 1R9
- Recruiting
- Investigational Site Number : 124019
-
-
New Brunswick
-
Moncton, New Brunswick, Canada, E1C 2Z3
- Recruiting
- Investigational Site Number : 124022
-
-
Ontario
-
Kingston, Ontario, Canada, K7L 2V7
- Recruiting
- Investigational Site Number : 124024
-
Kingston, Ontario, Canada, K7L 4X3
- Terminated
- Investigational Site Number : 124005
-
London, Ontario, Canada, N6A 5A5
- Recruiting
- Investigational Site Number : 124021
-
Toronto, Ontario, Canada, M5G 1X8
- Recruiting
- Investigational Site Number : 124006
-
Toronto, Ontario, Canada, M5G1X5
- Recruiting
- Investigational Site Number : 124013
-
-
Quebec
-
Sherbrooke, Quebec, Canada, J1K 2R1
- Recruiting
- Investigational Site Number : 124001
-
-
-
-
-
Beijing, China, 100045
- Recruiting
- Investigational Site Number : 1560001
-
Beijing, China, 100730
- Terminated
- Investigational Site Number : 156003
-
Guangzhou, China, 510080
- Terminated
- Investigational Site Number : 152357
-
Guangzhou, China, 510080
- Recruiting
- Investigational Site Number : 1560002
-
Hangzhou, China, 310003
- Terminated
- Investigational Site Number : 152358
-
Hangzhou, China
- Terminated
- Investigational Site Number : 152359
-
Nanjing, China, 210008
- Recruiting
- Investigational Site Number : 157252
-
Shanghai, China, 200092
- Terminated
- Investigational Site Number : 152356
-
Shanghai, China, 200040
- Terminated
- Investigational Site Number : 150899
-
Shanghai, China, 200040
- Terminated
- Investigational Site Number : 151787
-
-
-
-
-
Bogotá, Colombia
- Recruiting
- Investigational Site Number : 170004
-
-
-
-
-
Zagreb, Croatia, 10000
- Recruiting
- Investigational Site Number : 1910001
-
Zagreb, Croatia, 10000
- Recruiting
- Investigational Site Number : 1910002
-
Zagreb, Croatia, 10000
- Recruiting
- Investigational Site Number : 1910003
-
-
-
-
-
Prague, Czechia, 12808
- Recruiting
- Investigational Site Number : 150809
-
-
-
-
-
Copenhagen, Denmark, 2100
- Recruiting
- Investigational Site Number : 151229
-
-
-
-
-
Santo Domingo, Dominican Republic, 10101
- Recruiting
- Investigational Site Number : 2140001
-
-
-
-
-
Al Mansurah, Egypt
- Recruiting
- Investigational Site Number : 818007
-
Alexandria, Egypt
- Recruiting
- Investigational Site Number : 5748
-
Ash Sharqiyah, Egypt
- Recruiting
- Investigational Site Number : 9889
-
Asyut, Egypt
- Recruiting
- Investigational Site Number : 9888
-
Cairo, Egypt
- Recruiting
- Investigational Site Number : 9830
-
Cairo, Egypt, 11566
- Recruiting
- Investigational Site Number : 9829
-
Cairo, Egypt, 11432
- Recruiting
- Investigational Site Number : 8345
-
-
-
-
-
Besançon, France, 25000
- Completed
- Investigational Site Number : 250004
-
Bordeaux, France, 33000
- Recruiting
- Investigational Site Number : 250008
-
Brest, France, 29200
- Recruiting
- Investigational Site Number : 250005
-
Bron, France, 69677
- Recruiting
- Investigational Site Number : 250014
-
Caen, France, 14033
- Completed
- Investigational Site Number : 250002
-
Clichy, France, 92110
- Recruiting
- Investigational Site Number : 250001
-
Garches, France, 92380
- Recruiting
- Investigational Site Number : 250003
-
Lyon, France, 69003
- Completed
- Investigational Site Number : 250009
-
Marseille, France, 13008
- Terminated
- Investigational Site Number : 250011
-
Montpellier, France, 34295
- Recruiting
- Investigational Site Number : 2500013
-
Nantes, France, 44093
- Recruiting
- Investigational Site Number : 250006
-
Paris, France, 75015
- Recruiting
- Investigational Site Number : 250010
-
Paris, France, 75013
- Terminated
- Investigational Site Number : 250007
-
Strasbourg, France, 67000
- Recruiting
- Investigational Site Number : 250018
-
Toulouse, France, 31027
- Completed
- Investigational Site Number : 250017
-
Tours, France, 37032
- Recruiting
- Investigational Site Number : 250016
-
-
-
-
-
Berlin, Germany, 13353
- Recruiting
- Investigational Site Number : 151686
-
Düsseldorf, Germany, 40225
- Recruiting
- Investigational Site Number : 150783
-
Giessen, Germany, 35392
- Recruiting
- Investigational Site Number : 154150
-
Hamburg, Germany, 20099
- Recruiting
- Investigational Site Number : 151369
-
Hamburg, Germany, 20246
- Completed
- Investigational Site Number : 151368
-
Mainz, Germany, 55131
- Recruiting
- Investigational Site Number : 150031
-
Oberhausen, Germany, 46045
- Completed
- Investigational Site Number : 150432
-
-
-
-
-
Athens, Greece
- Recruiting
- Investigational Site Number : 300004
-
Athens, Greece, 115 27
- Recruiting
- Investigational Site Number : 300002
-
Pátrai, Greece, 26500
- Recruiting
- Investigational Site Number : 300003
-
Thessaloniki, Greece, 546 42
- Recruiting
- Investigational Site Number : 300001
-
-
-
-
-
Kowloon, Hong Kong
- Recruiting
- Investigational Site Number : 344001
-
-
-
-
-
Budapest, Hungary, H-1097
- Recruiting
- Investigational Site Number : 3480006
-
Létavértes, Hungary, 4281
- Recruiting
- Investigational Site Number : 3480003
-
Nyiregyháza, Hungary, 4400
- Recruiting
- Investigational Site Number : 3480007
-
Székesfehérvár, Hungary, 8000
- Recruiting
- Investigational Site Number : 3480008
-
-
-
-
-
Ahmedabad, India, 380015
- Recruiting
- Investigational Site Number : 356003
-
Jaipur, India, 302015
- Completed
- Investigational Site Number : 356004
-
Kolkata, India, 700017
- Recruiting
- Investigational Site Number : 356001
-
Mumbai, India, 400025
- Recruiting
- Investigational Site Number : 356005
-
Secunderabad, India, 500026
- Recruiting
- Investigational Site Number : 3560006
-
Vellore, India, 632004
- Recruiting
- Investigational Site Number : 356002
-
-
-
-
-
Jakarta, Indonesia
- Recruiting
- Investigational Site Number : 360001
-
-
-
-
-
Haifa, Israel
- Recruiting
- Investigational Site Number : 3760003
-
Jerusalem, Israel
- Recruiting
- Investigational Site Number : 3760001
-
Petah Tikva, Israel
- Recruiting
- Investigational Site Number : 3760002
-
-
-
-
-
Catania, Italy, 95100
- Recruiting
- Investigational Site Number : 380008
-
Genova, Italy, 16147
- Recruiting
- Investigational Site Number : 380006
-
Monza, Italy
- Recruiting
- Investigational Site Number : 380011
-
Naples, Italy
- Completed
- Investigational Site Number : 380010
-
Padova, Italy, 35128
- Recruiting
- Investigational Site Number : 380003
-
Udine, Italy, 33100
- Recruiting
- Investigational Site Number : 380001
-
-
Firenze
-
Florence, Firenze, Italy, 50134
- Completed
- Investigational Site Number : 380009
-
-
Milano
-
Milan, Milano, Italy, 20122
- Recruiting
- Investigational Site Number : 380004
-
-
Modena
-
Baggiovara, Modena, Italy, 41126
- Recruiting
- Investigational Site Number : 380005
-
-
Monza E Brianza
-
Monza, Monza E Brianza, Italy, 20052
- Recruiting
- Investigational Site Number : 380002
-
-
Roma
-
Rome, Roma, Italy, 00161
- Recruiting
- Investigational Site Number : 380007
-
-
Sardinia
-
Sassari, Sardinia, Italy, 07100
- Recruiting
- Investigational Site Number : 380014
-
-
-
-
-
Chiba, Japan, 266-0007
- Recruiting
- Investigational Site Number : 153217
-
Osaka, Japan, 545-8586
- Completed
- Investigational Site Number : 153205
-
Tokyo, Japan, 157-8535
- Recruiting
- Investigational Site Number : 153204
-
-
Tottori
-
Yonago, Tottori, Japan, 683-8504
- Completed
- Investigational Site Number : 153203
-
-
-
-
-
Amman, Jordan, 261
- Recruiting
- Investigational Site Number : 4000001
-
-
-
-
-
Kuwait City, Kuwait
- Completed
- Investigational Site Number : 154225
-
-
-
-
-
Beirut, Lebanon
- Recruiting
- Investigational Site Number : 4220004
-
Beirut, Lebanon, 166830
- Recruiting
- Investigational Site Number : 422001
-
-
-
-
-
Vilnius, Lithuania, 08661
- Recruiting
- Investigational Site Number : 154237
-
-
-
-
-
Kuala Lumpur, Malaysia, 59100
- Recruiting
- Investigational Site Number : 458002
-
Kuala Lumpur, Malaysia, 50586
- Recruiting
- Investigational Site Number : 458001
-
-
-
-
-
Amsterdam, Netherlands
- Completed
- Investigational Site Number : 150149
-
Amsterdam, Netherlands
- Terminated
- Investigational Site Number : 151171
-
-
-
-
-
Karachi, Pakistan
- Recruiting
- Investigational Site Number : 154264
-
Lahore, Pakistan
- Recruiting
- Investigational Site Number : 154266
-
-
-
-
-
Arequipa, Peru
- Completed
- Investigational Site Number : 604001
-
-
-
-
-
City of Muntinlupa, Philippines, 1000
- Recruiting
- Investigational Site Number : 608001
-
-
-
-
-
Warsaw, Poland, 04-730
- Recruiting
- Investigational Site Number : 150575
-
-
-
-
-
Coimbra, Portugal, 3040-081
- Recruiting
- Investigational Site Number : 620003
-
Lisbon, Portugal, 1649-035
- Recruiting
- Investigational Site Number : 620004
-
Ponta Delgada, Portugal, 9500-370
- Recruiting
- Investigational Site Number : 620009
-
-
-
-
-
Cluj-Napoca, Romania, 400006
- Recruiting
- Investigational Site Number : 642001
-
Cluj-Napoca, Romania, 400006
- Completed
- Investigational Site Number : 151188
-
Cluj-Napoca, Romania, 400006
- Recruiting
- Investigational Site Number : 642002
-
-
-
-
-
Moscow, Russia
- Recruiting
- Investigational Site Number : 643001
-
Saint Petersburg, Russia
- Recruiting
- Investigational Site Number : 643002
-
-
-
-
-
Al-Hasa, Saudi Arabia, 31982
- Recruiting
- Investigational Site Number : 682002
-
Jeddah, Saudi Arabia
- Completed
- Investigational Site Number : 682003
-
Mecca, Saudi Arabia, 24246
- Recruiting
- Investigational Site Number : 682004
-
-
-
-
-
Belgrade, Serbia, 11000
- Recruiting
- Investigational Site Number : 688001
-
Belgrade, Serbia, 11000
- Recruiting
- Investigational Site Number : 688002
-
Belgrade, Serbia, 11000
- Recruiting
- Investigational Site Number : 688005
-
Belgrade, Serbia, 11080
- Recruiting
- Investigational Site Number : 688003
-
Niš, Serbia, 18000
- Recruiting
- Investigational Site Number : 688004
-
-
-
-
-
Singapore, Singapore, 229899
- Recruiting
- Investigational Site Number : 702001
-
-
-
-
-
Bratislava, Slovakia, 833 40
- Completed
- Investigational Site Number : 703001
-
-
-
-
-
Durban, South Africa, 4001
- Recruiting
- Investigational Site Number : 154138
-
Johannesburg, South Africa
- Recruiting
- Investigational Site Number : 710-003
-
Johannesburg, South Africa, 2057
- Recruiting
- Investigational Site Number : 150346
-
-
-
-
-
Daejeon, South Korea
- Recruiting
- Investigational Site Number : 153191
-
Seoul, South Korea
- Recruiting
- Investigational Site Number : 153212
-
-
Gyeongsangnam-do
-
Yangsan, Gyeongsangnam-do, South Korea, 50612
- Terminated
- Investigational Site Number : 154208
-
-
Seoul-teukbyeolsi
-
Seoul, Seoul-teukbyeolsi, South Korea, 03080
- Recruiting
- Investigational Site Number : 153180
-
Seoul, Seoul-teukbyeolsi, South Korea, 03080
- Recruiting
- Investigational Site Number : 153196
-
Seoul, Seoul-teukbyeolsi, South Korea, 05505
- Recruiting
- Investigational Site Number : 151149
-
Seoul, Seoul-teukbyeolsi, South Korea, 06973
- Recruiting
- Investigational Site Number : 153222
-
-
-
-
-
Madrid, Spain, 28007
- Recruiting
- Investigational Site Number : 154163
-
Madrid, Spain, 28007
- Recruiting
- Investigational Site Number : 154236
-
Madrid, Spain, 28034
- Recruiting
- Investigational Site Number : 151524
-
Madrid, Spain, 28041
- Recruiting
- Investigational Site Number : 154199
-
Madrid, Spain, 28046
- Recruiting
- Investigational Site Number : 154160
-
Madrid, Spain, 28040
- Terminated
- Investigational Site Number : 153251
-
Sabadell, Spain, 08208
- Recruiting
- Investigational Site Number : 154145
-
Valencia, Spain, 46026
- Recruiting
- Investigational Site Number : 154205
-
Zaragoza, Spain, 50006
- Recruiting
- Investigational Site Number : 154238
-
Zaragoza, Spain, 50009
- Recruiting
- Investigational Site Number : 153216
-
-
A Coruña [La Coruña]
-
A Coruña, A Coruña [La Coruña], Spain, 15006
- Completed
- Investigational Site Number : 154146
-
-
Barcelona [Barcelona]
-
Barcelona, Barcelona [Barcelona], Spain, 08035
- Recruiting
- Investigational Site Number : 153237
-
Barcelona, Barcelona [Barcelona], Spain, 08035
- Recruiting
- Investigational Site Number : 154147
-
-
Madrid
-
Alcorcón, Madrid, Spain, 28922
- Recruiting
- Investigational Site Number : 154119
-
-
Pontevedra [Pontevedra]
-
Vigo, Pontevedra [Pontevedra], Spain, 36200
- Recruiting
- Investigational Site Number : 153213
-
-
Sevilla
-
Seville, Sevilla, Spain, 41013
- Recruiting
- Investigational Site Number : 153215
-
Seville, Sevilla, Spain, 41013
- Recruiting
- Investigational Site Number : 153219
-
-
-
-
-
Borås, Sweden, 501 82
- Completed
- Investigational Site Number : 154095
-
Malmo, Sweden, 205 02
- Active, not recruiting
- Investigational Site Number : 151726
-
Norrköping, Sweden, 601 82
- Recruiting
- Investigational Site Number : 154092
-
-
-
-
-
Aarau, Switzerland, 5001
- Recruiting
- Investigational Site Number : 157237
-
Bern, Switzerland, 3010
- Recruiting
- Investigational Site Number : 157045
-
Lausanne, Switzerland, 1011
- Recruiting
- Investigational Site Number : 157244
-
Zurich, Switzerland, 8057
- Recruiting
- Investigational Site Number : 157241
-
-
-
-
-
Chiayi City, Taiwan
- Recruiting
- Investigational Site Number : 151500
-
Chiayi City, Taiwan
- Recruiting
- Investigational Site Number : 154093
-
Hualien City, Taiwan, 970
- Recruiting
- Investigational Site Number : 152152
-
Kaohsiung City, Taiwan, 833
- Recruiting
- Investigational Site Number : 152246
-
Kaohsiung City, Taiwan, 807
- Completed
- Investigational Site Number : 152244
-
New Taipei City, Taiwan, 231
- Recruiting
- Investigational Site Number : 151534
-
Taichung, Taiwan, 404
- Recruiting
- Investigational Site Number : 151179
-
Taichung, Taiwan, 411
- Recruiting
- Investigational Site Number : 151181
-
Tainan, Taiwan, 704
- Recruiting
- Investigational Site Number : 153248
-
Tainan, Taiwan, 710
- Recruiting
- Investigational Site Number : 152153
-
Taipei, Taiwan, 112
- Recruiting
- Investigational Site Number : 152226
-
Taipei, Taiwan, 100
- Recruiting
- Investigational Site Number : 151182
-
Taipei, Taiwan, 104
- Recruiting
- Investigational Site Number : 152321
-
Tao Yuan County, Taiwan, 333
- Recruiting
- Investigational Site Number : 153158
-
-
-
-
-
Bangkok, Thailand, 10400
- Recruiting
- Investigational Site Number : 764003
-
Bangkok, Thailand, 10700
- Recruiting
- Investigational Site Number : 764004
-
Bangkok, Thailand
- Recruiting
- Investigational Site Number : 764001
-
Khon Kaen, Thailand, 40002
- Recruiting
- Investigational Site Number : 764005
-
-
-
-
-
Adana, Turkey (Türkiye), 01330
- Recruiting
- Investigational Site Number : 792006
-
Ankara, Turkey (Türkiye), 06620
- Recruiting
- Investigational Site Number : 792005
-
Ankara, Turkey (Türkiye)
- Recruiting
- Investigational Site Number : 792001
-
Ankara, Turkey (Türkiye), 06230
- Completed
- Investigational Site Number : 792002
-
Istanbul, Turkey (Türkiye)
- Recruiting
- Investigational Site Number : 792004
-
Izmir, Turkey (Türkiye)
- Recruiting
- Investigational Site Number : 792007
-
Malatya, Turkey (Türkiye)
- Completed
- Investigational Site Number : 792003
-
-
-
-
-
Dubai, United Arab Emirates
- Recruiting
- Investigational Site Number : 7840001
-
-
-
-
-
Manchester, United Kingdom, M13 9wl
- Recruiting
- Investigational Site Number : 150455
-
-
Cambridgeshire
-
Cambridge, Cambridgeshire, United Kingdom, CB2 2QQ
- Recruiting
- Investigational Site Number : 151340
-
-
England
-
Birmingham, England, United Kingdom, B15 2TH
- Recruiting
- Investigational Site Number : 152287
-
Birmingham, England, United Kingdom, B4 6NH
- Recruiting
- Investigational Site Number : 154240
-
London, England, United Kingdom, NW3 2QG
- Recruiting
- Investigational Site Number : 151123
-
-
London, City of
-
London, London, City of, United Kingdom, WC1N 3JH
- Recruiting
- Investigational Site Number : 150303
-
London, London, City of, United Kingdom, WC1N 3BG
- Recruiting
- Investigational Site Number : 151646
-
-
Manchester
-
Salford, Manchester, United Kingdom, M6 8HD
- Recruiting
- Investigational Site Number : 152361
-
-
-
-
Arizona
-
Phoenix, Arizona, United States, 85016
- Recruiting
- Phoenix Children's Hospital- Site Number : 840003
-
Tucson, Arizona, United States, 85724
- Recruiting
- University of Arizona- Site Number : 840015
-
-
Arkansas
-
Little Rock, Arkansas, United States, 72205
- Recruiting
- University of Arkansas for Medical Sciences- Site Number : 840113
-
Little Rock, Arkansas, United States, 72202
- Recruiting
- Arkansas Children's Hospital- Site Number : 840109
-
-
California
-
Beverly Hills, California, United States, 90211
- Recruiting
- Tower Hematology Oncology Medical Group- Site Number : 840056
-
Irvine, California, United States, 92617
- Recruiting
- University of California at Irvine- Site Number : 840036
-
Los Angeles, California, United States, 90027
- Recruiting
- Southern California Permanente Medical Group- Site Number : 840108
-
Los Angeles, California, United States, 90033
- Completed
- USC Health Sciences Center Dept of Genetics- Site Number : 840082
-
Orange, California, United States, 92868
- Recruiting
- Children's Hospital of Orange County- Site Number : 840074
-
Sacramento, California, United States, 95817
- Recruiting
- UC Davis MIND Institute- Site Number : 840010
-
Sacramento, California, United States, 95825
- Completed
- Kaiser Permanente Sacramento Medical Center- Site Number : 840042
-
San Diego, California, United States, 92093
- Completed
- University of California at San Diego- Site Number : 840007
-
San Francisco, California, United States, 94143
- Recruiting
- University of California San Francisco - Parnassus Campus- Site Number : 840051
-
Stanford, California, United States, 94305
- Recruiting
- Stanford University Medical Center- Site Number : 840022
-
-
Connecticut
-
New Haven, Connecticut, United States, 06510
- Recruiting
- Yale University School of Medicine- Site Number : 840047
-
-
District of Columbia
-
Washington D.C., District of Columbia, United States, 20010
- Recruiting
- Children's National Medical Center - Washington- Site Number : 840067
-
Washington D.C., District of Columbia, United States, 20037-3201
- Recruiting
- Investigational Site Number : 250012
-
-
Florida
-
Coral Springs, Florida, United States, 33065
- Recruiting
- University Hematology Oncology- Site Number : 840075
-
Jacksonville, Florida, United States, 32207
- Recruiting
- University of Florida Pediatrics Genetics- Site Number : 840121
-
Jacksonville, Florida, United States, 32216
- Completed
- The Atwal Clinic- Site Number : 840112
-
Miami, Florida, United States, 33136
- Recruiting
- University Of Miami SOM- Site Number : 840006
-
Tampa, Florida, United States, 33606
- Recruiting
- University of Florida-Genetics- Site Number : 840096
-
Tampa, Florida, United States, 33612
- Completed
- Pediatric Endocrine Associates- Site Number : 840017
-
-
Georgia
-
Decatur, Georgia, United States, 30033
- Recruiting
- Emory University School of Medicine- Human Genetics- Site Number : 840060
-
-
Illinois
-
Aurora, Illinois, United States, 80045
- Recruiting
- University of Colorado at Denver Genetics- Site Number : 840068
-
Chicago, Illinois, United States, 60612
- Recruiting
- Rush University Medical Center Genetics- Site Number : 840079
-
Chicago, Illinois, United States, 60611
- Recruiting
- Ann & Robert H. Lurie Children's Hospital of Chicago- Site Number : 840013
-
Chicago, Illinois, United States, 60611
- Recruiting
- Ann & Robert H. Lurie Children's Hospital of Chicago- Site Number : 840011
-
-
Indiana
-
Indianapolis, Indiana, United States, 46202
- Recruiting
- Indianapolis University School of Medicine- Site Number : 840027
-
-
Iowa
-
Iowa City, Iowa, United States, 52242
- Recruiting
- University of Iowa- Site Number : 840032
-
-
Kentucky
-
Louisville, Kentucky, United States, 40202
- Completed
- University of Louisville - Health Sciences Center- Site Number : 840030
-
-
Louisiana
-
New Orleans, Louisiana, United States, 70112
- Completed
- Tulane University School of Medicine- Site Number : 840001
-
-
Maine
-
Portland, Maine, United States, 04102
- Recruiting
- Maine Medical Partners Pediatric Specialty Care- Site Number : 840064
-
-
Maryland
-
Baltimore, Maryland, United States, 21205
- Completed
- John Hopkins- Site Number : 840044
-
-
Massachusetts
-
Boston, Massachusetts, United States, 02114
- Recruiting
- Massachusetts General Hospital-Genetics- Site Number : 840062
-
Boston, Massachusetts, United States, 02115
- Recruiting
- Boston Children's Hospital - PIN- Site Number : 840092
-
-
Michigan
-
Ann Arbor, Michigan, United States, 48109
- Recruiting
- University of Michigan Pediatrics- Site Number : 840107
-
Detroit, Michigan, United States, 48201
- Recruiting
- Children's Hospital of Michigan- Site Number : 840066
-
Grand Rapids, Michigan, United States, 49503
- Completed
- Spectrum for Health- Site Number : 840019
-
Grand Rapids, Michigan, United States, 49525
- Completed
- Infusion Associates - Grand Rapids- Site Number : 840050
-
-
Minnesota
-
Minneapolis, Minnesota, United States, 55455
- Recruiting
- University of Minnesota Medical Center Pediatrics- Site Number : 840076
-
Minneapolis, Minnesota, United States, 55404
- Recruiting
- Children's Hospitals and Clinics of Minnesota- Site Number : 840114
-
Minneapolis, Minnesota, United States, 55404
- Recruiting
- Children's Hospitals and Clinics of Minnesota- Site Number : 840046
-
-
Missouri
-
Columbia, Missouri, United States, 65212
- Recruiting
- University of Missouri Health System Department of Genetics- Site Number : 840031
-
Kansas City, Missouri, United States, 64108
- Completed
- Children's Mercy Adelle Hall Campus- Site Number : 840063
-
St Louis, Missouri, United States, 63110
- Recruiting
- Washington University- Site Number : 840100
-
-
Nebraska
-
Omaha, Nebraska, United States, 68198
- Recruiting
- University of Nebraska Medical Center- Site Number : 840084
-
-
Nevada
-
Las Vegas, Nevada, United States, 89109
- Recruiting
- Children's Specialty Center - Las Vegas- Site Number : 840008
-
-
New Jersey
-
Camden, New Jersey, United States, 08103
- Terminated
- Cooper Health Center- Site Number : 840098
-
Hackensack, New Jersey, United States, 07601
- Recruiting
- Joseph M. Sanzari Children's Hospital- Site Number : 840101
-
Morristown, New Jersey, United States, 07962
- Recruiting
- Atlantic Health System- Site Number : 840099
-
New Brunswick, New Jersey, United States, 08901
- Recruiting
- Saint Peter's University Hospital - New Brunswick- Site Number : 840016
-
Paterson, New Jersey, United States, 07503
- Recruiting
- St. Joseph's Children's Hospital- Site Number : 840057
-
-
New York
-
Manhasset, New York, United States, 11030
- Recruiting
- Northwell Health - Site Number : 840102
-
New York, New York, United States, 10016
- Recruiting
- New York University School Of Medicine- Site Number : 840040
-
New York, New York, United States, 10029
- Recruiting
- Mt. Sinai School of Medicine- Site Number : 840005
-
New York, New York, United States, 10032
- Recruiting
- Columbia University Irving Medical Center- Site Number : 840125
-
New York, New York, United States, 10029
- Recruiting
- Metropolitan Hospital Center- Site Number : 840110
-
Rochester, New York, United States, 14642
- Recruiting
- University of Rochester Medical Center- Site Number : 840105
-
Syracuse, New York, United States, 13210
- Recruiting
- State University of New York- Site Number : 840052
-
Valhalla, New York, United States, 10595
- Recruiting
- New York Medical College- Site Number : 840039
-
-
North Carolina
-
Charlotte, North Carolina, United States, 28232
- Recruiting
- Carolinas Medical Center Hospital- Site Number : 840065
-
Durham, North Carolina, United States, 27710
- Recruiting
- Duke University Medical Center Genetics Dept- Site Number : 840037
-
-
Ohio
-
Cincinnati, Ohio, United States, 45229
- Recruiting
- Cincinnati Children's Hospital Medical Center- Site Number : 840026
-
Cleveland, Ohio, United States, 44106
- Recruiting
- University Hospitals Cleveland Medical Center- Site Number : 840119
-
Cleveland, Ohio, United States, 44195
- Recruiting
- Cleveland Clinic - Cleveland- Site Number : 840048
-
Columbus, Ohio, United States, 43205
- Recruiting
- Nationwide Children's Hospital- Site Number : 840091
-
Dublin, Ohio, United States, 43017
- Recruiting
- LSD Data Registry Site LLC- Site Number : 840094
-
-
Oregon
-
Portland, Oregon, United States, 97239
- Recruiting
- Oregon Health & Science University (OHSU)- Site Number : 840080
-
-
Pennsylvania
-
Hershey, Pennsylvania, United States, 17033
- Recruiting
- Penn State Health Milton South Hershey Medical Center- Site Number : 840126
-
Philadelphia, Pennsylvania, United States, 19104
- Recruiting
- Children's Hospital of Philadelphia HUP Medical Genetics- Site Number : 840089
-
Philadelphia, Pennsylvania, United States, 19104
- Recruiting
- Children's Hospital of Philadelphia- Site Number : 840034
-
Pittsburgh, Pennsylvania, United States, 15224
- Recruiting
- UPMC Children's Hospital of Pittsburgh- Site Number : 840023
-
-
Rhode Island
-
Providence, Rhode Island, United States, 02903
- Completed
- Rhode Island Hospital Genetics- Site Number : 840053
-
-
South Carolina
-
Greenville, South Carolina, United States, 29605
- Recruiting
- Greenwood Genetic Center - Greenville- Site Number : 840055
-
-
Tennessee
-
Nashville, Tennessee, United States, 37212
- Recruiting
- Vanderbilt University Medical Center Diagnostic Lab- Site Number : 840049
-
-
Texas
-
Dallas, Texas, United States, 75226
- Completed
- Baylor Institute of Metabolic Disease- Site Number : 840058
-
Fort Worth, Texas, United States, 76104
- Recruiting
- Cook Children's Health Care System- Site Number : 840024
-
-
Utah
-
Salt Lake City, Utah, United States, 84132
- Recruiting
- University of Utah Department of Medical Genetics- Site Number : 840043
-
-
Virginia
-
Charlottesville, Virginia, United States, 22908
- Completed
- University of Virginia School of Medicine-Pediatrics- Site Number : 840078
-
Fairfax, Virginia, United States, 22030
- Recruiting
- O & O Alpan- Site Number : 840025
-
Norfolk, Virginia, United States, 23507
- Completed
- Children's Hospital of The King's Daughters- Site Number : 840072
-
-
Washington
-
Seattle, Washington, United States, 98105
- Recruiting
- Seattle Children's Hospital- Site Number : 840028
-
Seattle, Washington, United States, 98195
- Recruiting
- University of Washington Medical Center- Site Number : 840059
-
Tacoma, Washington, United States, 98405
- Recruiting
- Mary Bridge Children's Hospital & Health Center- Site Number : 840115
-
-
Wisconsin
-
Milwaukee, Wisconsin, United States, 53226
- Recruiting
- Children's Hospital of Wisconsin-Pediatrics- Site Number : 840054
-
-
-
-
-
Hanoi, Vietnam
- Recruiting
- Investigational Site Number : 154212
-
Ho Chi Minh City, Vietnam, 70000
- Recruiting
- Investigational Site Number : 704002
-
-
Participation Criteria
Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.
Eligibility Criteria
Ages Eligible for Study
- Child
- Adult
- Older Adult
Accepts Healthy Volunteers
No
Sampling Method
Non-Probability Sample
Study Population
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.
Description
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.
Study Plan
This section provides details of the study plan, including how the study is designed and what the study is measuring.
How is the study designed?
Design Details
- Observational Models: Cohort
- Time Perspectives: Prospective
Cohorts and Interventions
Group / Cohort |
|---|
|
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.
|
What is the study measuring?
Primary Outcome Measures
Outcome Measure |
Time Frame |
|---|---|
|
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
Time Frame: 42 years
|
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
Time Frame: 42 years
|
42 years
|
Collaborators and Investigators
This is where you will find people and organizations involved with this study.
Sponsor
Investigators
- Study Director: Study Director, Genzyme, a Sanofi Company
Publications and helpful links
The person responsible for entering information about the study voluntarily provides these publications. These may be about anything related to the study.
General Publications
- 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.
- Mistry 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.
- Rosenbloom 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.
- Weinreb 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.
- Weinreb 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.
- Buyers RP, Collin-Histed T. Foreword. Am J Hematol. 2015 Jul;90 Suppl 1:S1. doi: 10.1002/ajh.24053. No abstract available.
- Weinreb 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.
- Ain 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.
Study record dates
These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.
Study Major Dates
Study Start (Actual)
April 1, 1991
Primary Completion (Estimated)
January 31, 2034
Study Completion (Estimated)
January 31, 2034
Study Registration Dates
First Submitted
July 12, 2006
First Submitted That Met QC Criteria
July 31, 2006
First Posted (Estimated)
August 1, 2006
Study Record Updates
Last Update Posted (Actual)
April 14, 2026
Last Update Submitted That Met QC Criteria
April 13, 2026
Last Verified
April 1, 2026
More Information
Terms related to this study
Additional Relevant MeSH Terms
- Brain Diseases
- Central Nervous System Diseases
- Nervous System Diseases
- Metabolism, Inborn Errors
- Genetic Diseases, Inborn
- Metabolic Diseases
- Lipid Metabolism Disorders
- Lysosomal Storage Diseases
- Brain Diseases, Metabolic, Inborn
- Brain Diseases, Metabolic
- Lipid Metabolism, Inborn Errors
- Lysosomal Storage Diseases, Nervous System
- Sphingolipidoses
- Lipidoses
- Congenital, Hereditary, and Neonatal Diseases and Abnormalities
- Nutritional and Metabolic Diseases
- Gaucher Disease
Other Study ID Numbers
- DIREGC07009
- ICGG Gaucher Registry (Other Identifier: Sanofi)
- U1111-1295-5844 (Registry Identifier: ICTRP)
This information was retrieved directly from the website clinicaltrials.gov without any changes. If you have any requests to change, remove or update your study details, please contact register@clinicaltrials.gov. As soon as a change is implemented on clinicaltrials.gov, this will be updated automatically on our website as well.