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

13. april 2026 opdateret af: Genzyme, a Sanofi Company

Gaucher Disease Registry Protocol

ICGG Gaucher Registry er et igangværende, internationalt multicenter, strengt observationsprogram, der sporer de rutinemæssige kliniske resultater for patienter med Gauchers sygdom, uanset behandlingsstatus. Ingen eksperimentel intervention er involveret; Patienter i Registret gennemgår kliniske vurderinger og modtager pleje som bestemt af patientens behandlende læge.

Registrets formål er:

At øge forståelsen af variationen, progressionen, identifikationen og den naturlige historie af Gauchers sygdom med det ultimative mål at bedre vejlede og vurdere terapeutisk intervention.
At bistå Gauchers medicinske samfund med udviklingen af anbefalinger til overvågning af patienter og at levere rapporter om patientresultater for at optimere patientbehandlingen.
At karakterisere Gauchers sygdomspopulation.
At evaluere den langsigtede effektivitet af imiglucerase og eliglustat.

Gauchers graviditetsunderregister: Det primære formål med dette underregister er at spore graviditetsresultater, herunder komplikationer og spædbarnsvækst, hos alle kvinder med Gauchers sygdom under graviditeten, uanset om de modtager sygdomsspecifik behandling. Der gives ingen eksperimentel intervention; således vil en patient gennemgå kliniske vurderinger og modtage standardbehandling som bestemt af patientens læge. Hvis en patient giver sit samtykke til dette underregister, vil oplysninger om patientens medicinske og obstetriske historie, graviditet og fødsel blive indsamlet, og hvis en patient giver sit samtykke til dataindsamling for sit spædbarn, vil data om spædbarnets vækst til og med måned 36 efter fødslen blive indsamlet.

Studieoversigt

Status

Rekruttering

Betingelser

Undersøgelsestype

Observationel

Tilmelding (Anslået)

12000

Kontakter og lokationer

Dette afsnit indeholder kontaktoplysninger for dem, der udfører undersøgelsen, og oplysninger om, hvor denne undersøgelse udføres.

Studiekontakt

Navn: ICGG Gaucher Registry HelpLine
Telefonnummer: +1(617) 252-7500

Undersøgelse Kontakt Backup

Navn: Trial Transparency email recommended (Toll free number for US & Canada)
Telefonnummer: option 6 800-633-1610
E-mail: Contact-US@sanofi.com

Studiesteder

Argentina
- - Buenos Aires, Argentina, 1425
    - Afsluttet
    - Investigational Site Number : 032012
  - Buenos Aires, Argentina, 1107
    - Rekruttering
    - Investigational Site Number : 604002
  - Buenos Aires, Argentina, 1428
    - Rekruttering
    - Investigational Site Number : 032014
  - Corrientes, Argentina, 3400
    - Afsluttet
    - Investigational Site Number : 154176
  - Córdoba, Argentina, 5004
    - Afsluttet
    - Investigational Site Number : 032011
- Buenos Aires
  - La Plata, Buenos Aires, Argentina, 1900
    - Afsluttet
    - Investigational Site Number : 032003
  - Munro, Buenos Aires, Argentina, 1605
    - Rekruttering
    - Investigational Site Number : 150661
  - Sarandí, Buenos Aires, Argentina, 1123
    - Afsluttet
    - Investigational Site Number : 151085
Australien
- New South Wales
  - Sydney, New South Wales, Australien, 2050
    - Afsluttet
    - Investigational Site Number : 151431
  - Westmead, New South Wales, Australien, 2145
    - Rekruttering
    - Investigational Site Number : 151069
- Queensland
  - Brisbane, Queensland, Australien, 4029
    - Afsluttet
    - Investigational Site Number : 151010
  - Townsville, Queensland, Australien, 4814
    - Afsluttet
    - Investigational Site Number : 151491
- South Australia
  - Adelaide, South Australia, Australien, 5000
    - Rekruttering
    - Investigational Site Number : 151002
- Tasmania
  - Hobart, Tasmania, Australien, 7000
    - Rekruttering
    - Investigational Site Number : 151725
- Victoria
  - Clayton, Victoria, Australien, 3168
    - Rekruttering
    - Investigational Site Number : 151011
  - Parkville, Victoria, Australien, 3050
    - Rekruttering
    - Investigational Site Number : 151008
- Western Australia
  - Murdoch, Western Australia, Australien, 6150
    - Rekruttering
    - Investigational Site Number : 151015
Belgien
- - Antwerp, Belgien, 2020
    - Rekruttering
    - Investigational Site Number : 150722
  - Bruges, Belgien, 8000
    - Afsluttet
    - Investigational Site Number : 151156
  - Brussels, Belgien, 1090
    - Rekruttering
    - Investigational Site Number : 150944
  - Brussels, Belgien, 1090
    - Rekruttering
    - Investigational Site Number : 152345
  - Brussels, Belgien, 1200
    - Rekruttering
    - Investigational Site Number : 150517
  - Brussels, Belgien, 1020
    - Rekruttering
    - Investigational Site Number : 151796
  - Edegem, Belgien, 2650
    - Rekruttering
    - Investigational Site Number : 154285
  - Ghent, Belgien, 9000
    - Afsluttet
    - Investigational Site Number : 151134
  - Leuven, Belgien, 3000
    - Rekruttering
    - Investigational Site Number : 151668
Brasilien
- - Rio de Janeiro, Brasilien, 20211-030
    - Rekruttering
    - HEMORIO- Site Number : 076006
  - São Paulo, Brasilien, 04020-041
    - Rekruttering
    - Instituto de Genética e Erros Inatos do Metabolismo- Site Number : 076002
  - São Paulo, Brasilien, 05403-000
    - Afsluttet
    - Hospital das Clinicas da Faculdade de Medicina da Universidade de Sao Paulo- Site Number : 076008
- Alagoas
  - Maceió, Alagoas, Brasilien, 57010-300
    - Rekruttering
    - Universidade Estadual de Ciencias da Saude de Alagoas- Site Number : 076005
- Paraná
  - Curitiba, Paraná, Brasilien, 80060-900
    - Rekruttering
    - Hospital de Clinicas da Universidade Federal do Parana- Site Number : 076010
- Rio Grande do Sul
  - Porto Alegre, Rio Grande do Sul, Brasilien, 90035-903
    - Rekruttering
    - Hospital de Clinicas de Porto Alegre- Site Number : 076007
- São Paulo
  - Campinas, São Paulo, Brasilien, 13034-685
    - Rekruttering
    - Hospital e Maternidade Celso Pierro - PUC-Campinas- Site Number : 076012
  - Ribeirão Preto, São Paulo, Brasilien, 14049-900
    - Rekruttering
    - Hospital das Clinicas da Faculdade de Medicina de Ribeirao Preto- Site Number : 076001
Bulgarien
- - Sofia, Bulgarien, 1680
    - Rekruttering
    - Investigational Site Number : 100001
  - Sofia, Bulgarien
    - Rekruttering
    - Investigational Site Number : 151164
Canada
- Alberta
  - Calgary, Alberta, Canada, T2E 7Z4
    - Rekruttering
    - Investigational Site Number : 124014
  - Edmonton, Alberta, Canada, T6G 2B7
    - Rekruttering
    - Investigational Site Number : 124002
- British Columbia
  - Vancouver, British Columbia, Canada, V5Z 1M9
    - Rekruttering
    - Investigational Site Number : 124010
  - Vancouver, British Columbia, Canada, V6H 3N1
    - Afsluttet
    - Investigational Site Number : 124011
- Manitoba
  - Winnipeg, Manitoba, Canada, R3A 1R9
    - Rekruttering
    - Investigational Site Number : 124019
- New Brunswick
  - Moncton, New Brunswick, Canada, E1C 2Z3
    - Rekruttering
    - Investigational Site Number : 124022
- Ontario
  - Kingston, Ontario, Canada, K7L 2V7
    - Rekruttering
    - Investigational Site Number : 124024
  - Kingston, Ontario, Canada, K7L 4X3
    - Afsluttet
    - Investigational Site Number : 124005
  - London, Ontario, Canada, N6A 5A5
    - Rekruttering
    - Investigational Site Number : 124021
  - Toronto, Ontario, Canada, M5G 1X8
    - Rekruttering
    - Investigational Site Number : 124006
  - Toronto, Ontario, Canada, M5G1X5
    - Rekruttering
    - Investigational Site Number : 124013
- Quebec
  - Sherbrooke, Quebec, Canada, J1K 2R1
    - Rekruttering
    - Investigational Site Number : 124001
Colombia
- - Bogotá, Colombia
    - Rekruttering
    - Investigational Site Number : 170004
Danmark
- - Copenhagen, Danmark, 2100
    - Rekruttering
    - Investigational Site Number : 151229
Det Forenede Kongerige
- - Manchester, Det Forenede Kongerige, M13 9wl
    - Rekruttering
    - Investigational Site Number : 150455
- Cambridgeshire
  - Cambridge, Cambridgeshire, Det Forenede Kongerige, CB2 2QQ
    - Rekruttering
    - Investigational Site Number : 151340
- England
  - Birmingham, England, Det Forenede Kongerige, B15 2TH
    - Rekruttering
    - Investigational Site Number : 152287
  - Birmingham, England, Det Forenede Kongerige, B4 6NH
    - Rekruttering
    - Investigational Site Number : 154240
  - London, England, Det Forenede Kongerige, NW3 2QG
    - Rekruttering
    - Investigational Site Number : 151123
- London, City of
  - London, London, City of, Det Forenede Kongerige, WC1N 3JH
    - Rekruttering
    - Investigational Site Number : 150303
  - London, London, City of, Det Forenede Kongerige, WC1N 3BG
    - Rekruttering
    - Investigational Site Number : 151646
- Manchester
  - Salford, Manchester, Det Forenede Kongerige, M6 8HD
    - Rekruttering
    - Investigational Site Number : 152361
Dominikanske republik
- - Santo Domingo, Dominikanske republik, 10101
    - Rekruttering
    - Investigational Site Number : 2140001
Egypten
- - Al Mansurah, Egypten
    - Rekruttering
    - Investigational Site Number : 818007
  - Alexandria, Egypten
    - Rekruttering
    - Investigational Site Number : 5748
  - Ash Sharqiyah, Egypten
    - Rekruttering
    - Investigational Site Number : 9889
  - Asyut, Egypten
    - Rekruttering
    - Investigational Site Number : 9888
  - Cairo, Egypten
    - Rekruttering
    - Investigational Site Number : 9830
  - Cairo, Egypten, 11566
    - Rekruttering
    - Investigational Site Number : 9829
  - Cairo, Egypten, 11432
    - Rekruttering
    - Investigational Site Number : 8345
Filippinerne
- - City of Muntinlupa, Filippinerne, 1000
    - Rekruttering
    - Investigational Site Number : 608001
Forenede Arabiske Emirater
- - Dubai, Forenede Arabiske Emirater
    - Rekruttering
    - Investigational Site Number : 7840001
Forenede Stater
- Arizona
  - Phoenix, Arizona, Forenede Stater, 85016
    - Rekruttering
    - Phoenix Children's Hospital- Site Number : 840003
  - Tucson, Arizona, Forenede Stater, 85724
    - Rekruttering
    - University of Arizona- Site Number : 840015
- Arkansas
  - Little Rock, Arkansas, Forenede Stater, 72205
    - Rekruttering
    - University of Arkansas for Medical Sciences- Site Number : 840113
  - Little Rock, Arkansas, Forenede Stater, 72202
    - Rekruttering
    - Arkansas Children's Hospital- Site Number : 840109
- California
  - Beverly Hills, California, Forenede Stater, 90211
    - Rekruttering
    - Tower Hematology Oncology Medical Group- Site Number : 840056
  - Irvine, California, Forenede Stater, 92617
    - Rekruttering
    - University of California at Irvine- Site Number : 840036
  - Los Angeles, California, Forenede Stater, 90027
    - Rekruttering
    - Southern California Permanente Medical Group- Site Number : 840108
  - Los Angeles, California, Forenede Stater, 90033
    - Afsluttet
    - USC Health Sciences Center Dept of Genetics- Site Number : 840082
  - Orange, California, Forenede Stater, 92868
    - Rekruttering
    - Children's Hospital of Orange County- Site Number : 840074
  - Sacramento, California, Forenede Stater, 95817
    - Rekruttering
    - UC Davis MIND Institute- Site Number : 840010
  - Sacramento, California, Forenede Stater, 95825
    - Afsluttet
    - Kaiser Permanente Sacramento Medical Center- Site Number : 840042
  - San Diego, California, Forenede Stater, 92093
    - Afsluttet
    - University of California at San Diego- Site Number : 840007
  - San Francisco, California, Forenede Stater, 94143
    - Rekruttering
    - University of California San Francisco - Parnassus Campus- Site Number : 840051
  - Stanford, California, Forenede Stater, 94305
    - Rekruttering
    - Stanford University Medical Center- Site Number : 840022
- Connecticut
  - New Haven, Connecticut, Forenede Stater, 06510
    - Rekruttering
    - Yale University School of Medicine- Site Number : 840047
- District of Columbia
  - Washington D.C., District of Columbia, Forenede Stater, 20010
    - Rekruttering
    - Children's National Medical Center - Washington- Site Number : 840067
  - Washington D.C., District of Columbia, Forenede Stater, 20037-3201
    - Rekruttering
    - Investigational Site Number : 250012
- Florida
  - Coral Springs, Florida, Forenede Stater, 33065
    - Rekruttering
    - University Hematology Oncology- Site Number : 840075
  - Jacksonville, Florida, Forenede Stater, 32207
    - Rekruttering
    - University of Florida Pediatrics Genetics- Site Number : 840121
  - Jacksonville, Florida, Forenede Stater, 32216
    - Afsluttet
    - The Atwal Clinic- Site Number : 840112
  - Miami, Florida, Forenede Stater, 33136
    - Rekruttering
    - University Of Miami SOM- Site Number : 840006
  - Tampa, Florida, Forenede Stater, 33606
    - Rekruttering
    - University of Florida-Genetics- Site Number : 840096
  - Tampa, Florida, Forenede Stater, 33612
    - Afsluttet
    - Pediatric Endocrine Associates- Site Number : 840017
- Georgia
  - Decatur, Georgia, Forenede Stater, 30033
    - Rekruttering
    - Emory University School of Medicine- Human Genetics- Site Number : 840060
- Illinois
  - Aurora, Illinois, Forenede Stater, 80045
    - Rekruttering
    - University of Colorado at Denver Genetics- Site Number : 840068
  - Chicago, Illinois, Forenede Stater, 60612
    - Rekruttering
    - Rush University Medical Center Genetics- Site Number : 840079
  - Chicago, Illinois, Forenede Stater, 60611
    - Rekruttering
    - Ann & Robert H. Lurie Children's Hospital of Chicago- Site Number : 840013
  - Chicago, Illinois, Forenede Stater, 60611
    - Rekruttering
    - Ann & Robert H. Lurie Children's Hospital of Chicago- Site Number : 840011
- Indiana
  - Indianapolis, Indiana, Forenede Stater, 46202
    - Rekruttering
    - Indianapolis University School of Medicine- Site Number : 840027
- Iowa
  - Iowa City, Iowa, Forenede Stater, 52242
    - Rekruttering
    - University of Iowa- Site Number : 840032
- Kentucky
  - Louisville, Kentucky, Forenede Stater, 40202
    - Afsluttet
    - University of Louisville - Health Sciences Center- Site Number : 840030
- Louisiana
  - New Orleans, Louisiana, Forenede Stater, 70112
    - Afsluttet
    - Tulane University School of Medicine- Site Number : 840001
- Maine
  - Portland, Maine, Forenede Stater, 04102
    - Rekruttering
    - Maine Medical Partners Pediatric Specialty Care- Site Number : 840064
- Maryland
  - Baltimore, Maryland, Forenede Stater, 21205
    - Afsluttet
    - John Hopkins- Site Number : 840044
- Massachusetts
  - Boston, Massachusetts, Forenede Stater, 02114
    - Rekruttering
    - Massachusetts General Hospital-Genetics- Site Number : 840062
  - Boston, Massachusetts, Forenede Stater, 02115
    - Rekruttering
    - Boston Children's Hospital - PIN- Site Number : 840092
- Michigan
  - Ann Arbor, Michigan, Forenede Stater, 48109
    - Rekruttering
    - University of Michigan Pediatrics- Site Number : 840107
  - Detroit, Michigan, Forenede Stater, 48201
    - Rekruttering
    - Children's Hospital of Michigan- Site Number : 840066
  - Grand Rapids, Michigan, Forenede Stater, 49503
    - Afsluttet
    - Spectrum for Health- Site Number : 840019
  - Grand Rapids, Michigan, Forenede Stater, 49525
    - Afsluttet
    - Infusion Associates - Grand Rapids- Site Number : 840050
- Minnesota
  - Minneapolis, Minnesota, Forenede Stater, 55455
    - Rekruttering
    - University of Minnesota Medical Center Pediatrics- Site Number : 840076
  - Minneapolis, Minnesota, Forenede Stater, 55404
    - Rekruttering
    - Children's Hospitals and Clinics of Minnesota- Site Number : 840114
  - Minneapolis, Minnesota, Forenede Stater, 55404
    - Rekruttering
    - Children's Hospitals and Clinics of Minnesota- Site Number : 840046
- Missouri
  - Columbia, Missouri, Forenede Stater, 65212
    - Rekruttering
    - University of Missouri Health System Department of Genetics- Site Number : 840031
  - Kansas City, Missouri, Forenede Stater, 64108
    - Afsluttet
    - Children's Mercy Adelle Hall Campus- Site Number : 840063
  - St Louis, Missouri, Forenede Stater, 63110
    - Rekruttering
    - Washington University- Site Number : 840100
- Nebraska
  - Omaha, Nebraska, Forenede Stater, 68198
    - Rekruttering
    - University of Nebraska Medical Center- Site Number : 840084
- Nevada
  - Las Vegas, Nevada, Forenede Stater, 89109
    - Rekruttering
    - Children's Specialty Center - Las Vegas- Site Number : 840008
- New Jersey
  - Camden, New Jersey, Forenede Stater, 08103
    - Afsluttet
    - Cooper Health Center- Site Number : 840098
  - Hackensack, New Jersey, Forenede Stater, 07601
    - Rekruttering
    - Joseph M. Sanzari Children's Hospital- Site Number : 840101
  - Morristown, New Jersey, Forenede Stater, 07962
    - Rekruttering
    - Atlantic Health System- Site Number : 840099
  - New Brunswick, New Jersey, Forenede Stater, 08901
    - Rekruttering
    - Saint Peter's University Hospital - New Brunswick- Site Number : 840016
  - Paterson, New Jersey, Forenede Stater, 07503
    - Rekruttering
    - St. Joseph's Children's Hospital- Site Number : 840057
- New York
  - Manhasset, New York, Forenede Stater, 11030
    - Rekruttering
    - Northwell Health - Site Number : 840102
  - New York, New York, Forenede Stater, 10016
    - Rekruttering
    - New York University School Of Medicine- Site Number : 840040
  - New York, New York, Forenede Stater, 10029
    - Rekruttering
    - Mt. Sinai School of Medicine- Site Number : 840005
  - New York, New York, Forenede Stater, 10032
    - Rekruttering
    - Columbia University Irving Medical Center- Site Number : 840125
  - New York, New York, Forenede Stater, 10029
    - Rekruttering
    - Metropolitan Hospital Center- Site Number : 840110
  - Rochester, New York, Forenede Stater, 14642
    - Rekruttering
    - University of Rochester Medical Center- Site Number : 840105
  - Syracuse, New York, Forenede Stater, 13210
    - Rekruttering
    - State University of New York- Site Number : 840052
  - Valhalla, New York, Forenede Stater, 10595
    - Rekruttering
    - New York Medical College- Site Number : 840039
- North Carolina
  - Charlotte, North Carolina, Forenede Stater, 28232
    - Rekruttering
    - Carolinas Medical Center Hospital- Site Number : 840065
  - Durham, North Carolina, Forenede Stater, 27710
    - Rekruttering
    - Duke University Medical Center Genetics Dept- Site Number : 840037
- Ohio
  - Cincinnati, Ohio, Forenede Stater, 45229
    - Rekruttering
    - Cincinnati Children's Hospital Medical Center- Site Number : 840026
  - Cleveland, Ohio, Forenede Stater, 44106
    - Rekruttering
    - University Hospitals Cleveland Medical Center- Site Number : 840119
  - Cleveland, Ohio, Forenede Stater, 44195
    - Rekruttering
    - Cleveland Clinic - Cleveland- Site Number : 840048
  - Columbus, Ohio, Forenede Stater, 43205
    - Rekruttering
    - Nationwide Children's Hospital- Site Number : 840091
  - Dublin, Ohio, Forenede Stater, 43017
    - Rekruttering
    - LSD Data Registry Site LLC- Site Number : 840094
- Oregon
  - Portland, Oregon, Forenede Stater, 97239
    - Rekruttering
    - Oregon Health & Science University (OHSU)- Site Number : 840080
- Pennsylvania
  - Hershey, Pennsylvania, Forenede Stater, 17033
    - Rekruttering
    - Penn State Health Milton South Hershey Medical Center- Site Number : 840126
  - Philadelphia, Pennsylvania, Forenede Stater, 19104
    - Rekruttering
    - Children's Hospital of Philadelphia HUP Medical Genetics- Site Number : 840089
  - Philadelphia, Pennsylvania, Forenede Stater, 19104
    - Rekruttering
    - Children's Hospital of Philadelphia- Site Number : 840034
  - Pittsburgh, Pennsylvania, Forenede Stater, 15224
    - Rekruttering
    - UPMC Children's Hospital of Pittsburgh- Site Number : 840023
- Rhode Island
  - Providence, Rhode Island, Forenede Stater, 02903
    - Afsluttet
    - Rhode Island Hospital Genetics- Site Number : 840053
- South Carolina
  - Greenville, South Carolina, Forenede Stater, 29605
    - Rekruttering
    - Greenwood Genetic Center - Greenville- Site Number : 840055
- Tennessee
  - Nashville, Tennessee, Forenede Stater, 37212
    - Rekruttering
    - Vanderbilt University Medical Center Diagnostic Lab- Site Number : 840049
- Texas
  - Dallas, Texas, Forenede Stater, 75226
    - Afsluttet
    - Baylor Institute of Metabolic Disease- Site Number : 840058
  - Fort Worth, Texas, Forenede Stater, 76104
    - Rekruttering
    - Cook Children's Health Care System- Site Number : 840024
- Utah
  - Salt Lake City, Utah, Forenede Stater, 84132
    - Rekruttering
    - University of Utah Department of Medical Genetics- Site Number : 840043
- Virginia
  - Charlottesville, Virginia, Forenede Stater, 22908
    - Afsluttet
    - University of Virginia School of Medicine-Pediatrics- Site Number : 840078
  - Fairfax, Virginia, Forenede Stater, 22030
    - Rekruttering
    - O & O Alpan- Site Number : 840025
  - Norfolk, Virginia, Forenede Stater, 23507
    - Afsluttet
    - Children's Hospital of The King's Daughters- Site Number : 840072
- Washington
  - Seattle, Washington, Forenede Stater, 98105
    - Rekruttering
    - Seattle Children's Hospital- Site Number : 840028
  - Seattle, Washington, Forenede Stater, 98195
    - Rekruttering
    - University of Washington Medical Center- Site Number : 840059
  - Tacoma, Washington, Forenede Stater, 98405
    - Rekruttering
    - Mary Bridge Children's Hospital & Health Center- Site Number : 840115
- Wisconsin
  - Milwaukee, Wisconsin, Forenede Stater, 53226
    - Rekruttering
    - Children's Hospital of Wisconsin-Pediatrics- Site Number : 840054
Frankrig
- - Besançon, Frankrig, 25000
    - Afsluttet
    - Investigational Site Number : 250004
  - Bordeaux, Frankrig, 33000
    - Rekruttering
    - Investigational Site Number : 250008
  - Brest, Frankrig, 29200
    - Rekruttering
    - Investigational Site Number : 250005
  - Bron, Frankrig, 69677
    - Rekruttering
    - Investigational Site Number : 250014
  - Caen, Frankrig, 14033
    - Afsluttet
    - Investigational Site Number : 250002
  - Clichy, Frankrig, 92110
    - Rekruttering
    - Investigational Site Number : 250001
  - Garches, Frankrig, 92380
    - Rekruttering
    - Investigational Site Number : 250003
  - Lyon, Frankrig, 69003
    - Afsluttet
    - Investigational Site Number : 250009
  - Marseille, Frankrig, 13008
    - Afsluttet
    - Investigational Site Number : 250011
  - Montpellier, Frankrig, 34295
    - Rekruttering
    - Investigational Site Number : 2500013
  - Nantes, Frankrig, 44093
    - Rekruttering
    - Investigational Site Number : 250006
  - Paris, Frankrig, 75015
    - Rekruttering
    - Investigational Site Number : 250010
  - Paris, Frankrig, 75013
    - Afsluttet
    - Investigational Site Number : 250007
  - Strasbourg, Frankrig, 67000
    - Rekruttering
    - Investigational Site Number : 250018
  - Toulouse, Frankrig, 31027
    - Afsluttet
    - Investigational Site Number : 250017
  - Tours, Frankrig, 37032
    - Rekruttering
    - Investigational Site Number : 250016
Grækenland
- - Athens, Grækenland
    - Rekruttering
    - Investigational Site Number : 300004
  - Athens, Grækenland, 115 27
    - Rekruttering
    - Investigational Site Number : 300002
  - Pátrai, Grækenland, 26500
    - Rekruttering
    - Investigational Site Number : 300003
  - Thessaloniki, Grækenland, 546 42
    - Rekruttering
    - Investigational Site Number : 300001
Holland
- - Amsterdam, Holland
    - Afsluttet
    - Investigational Site Number : 150149
  - Amsterdam, Holland
    - Afsluttet
    - Investigational Site Number : 151171
Hong Kong
- - Kowloon, Hong Kong
    - Rekruttering
    - Investigational Site Number : 344001
Indien
- - Ahmedabad, Indien, 380015
    - Rekruttering
    - Investigational Site Number : 356003
  - Jaipur, Indien, 302015
    - Afsluttet
    - Investigational Site Number : 356004
  - Kolkata, Indien, 700017
    - Rekruttering
    - Investigational Site Number : 356001
  - Mumbai, Indien, 400025
    - Rekruttering
    - Investigational Site Number : 356005
  - Secunderabad, Indien, 500026
    - Rekruttering
    - Investigational Site Number : 3560006
  - Vellore, Indien, 632004
    - Rekruttering
    - Investigational Site Number : 356002
Indonesien
- - Jakarta, Indonesien
    - Rekruttering
    - Investigational Site Number : 360001
Israel
- - Haifa, Israel
    - Rekruttering
    - Investigational Site Number : 3760003
  - Jerusalem, Israel
    - Rekruttering
    - Investigational Site Number : 3760001
  - Petah Tikva, Israel
    - Rekruttering
    - Investigational Site Number : 3760002
Italien
- - Catania, Italien, 95100
    - Rekruttering
    - Investigational Site Number : 380008
  - Genova, Italien, 16147
    - Rekruttering
    - Investigational Site Number : 380006
  - Monza, Italien
    - Rekruttering
    - Investigational Site Number : 380011
  - Naples, Italien
    - Afsluttet
    - Investigational Site Number : 380010
  - Padova, Italien, 35128
    - Rekruttering
    - Investigational Site Number : 380003
  - Udine, Italien, 33100
    - Rekruttering
    - Investigational Site Number : 380001
- Firenze
  - Florence, Firenze, Italien, 50134
    - Afsluttet
    - Investigational Site Number : 380009
- Milano
  - Milan, Milano, Italien, 20122
    - Rekruttering
    - Investigational Site Number : 380004
- Modena
  - Baggiovara, Modena, Italien, 41126
    - Rekruttering
    - Investigational Site Number : 380005
- Monza E Brianza
  - Monza, Monza E Brianza, Italien, 20052
    - Rekruttering
    - Investigational Site Number : 380002
- Roma
  - Rome, Roma, Italien, 00161
    - Rekruttering
    - Investigational Site Number : 380007
- Sardinia
  - Sassari, Sardinia, Italien, 07100
    - Rekruttering
    - Investigational Site Number : 380014
Japan
- - Chiba, Japan, 266-0007
    - Rekruttering
    - Investigational Site Number : 153217
  - Osaka, Japan, 545-8586
    - Afsluttet
    - Investigational Site Number : 153205
  - Tokyo, Japan, 157-8535
    - Rekruttering
    - Investigational Site Number : 153204
- Tottori
  - Yonago, Tottori, Japan, 683-8504
    - Afsluttet
    - Investigational Site Number : 153203
Jordan
- - Amman, Jordan, 261
    - Rekruttering
    - Investigational Site Number : 4000001
Kina
- - Beijing, Kina, 100045
    - Rekruttering
    - Investigational Site Number : 1560001
  - Beijing, Kina, 100730
    - Afsluttet
    - Investigational Site Number : 156003
  - Guangzhou, Kina, 510080
    - Afsluttet
    - Investigational Site Number : 152357
  - Guangzhou, Kina, 510080
    - Rekruttering
    - Investigational Site Number : 1560002
  - Hangzhou, Kina, 310003
    - Afsluttet
    - Investigational Site Number : 152358
  - Hangzhou, Kina
    - Afsluttet
    - Investigational Site Number : 152359
  - Nanjing, Kina, 210008
    - Rekruttering
    - Investigational Site Number : 157252
  - Shanghai, Kina, 200092
    - Afsluttet
    - Investigational Site Number : 152356
  - Shanghai, Kina, 200040
    - Afsluttet
    - Investigational Site Number : 150899
  - Shanghai, Kina, 200040
    - Afsluttet
    - Investigational Site Number : 151787
Kroatien
- - Zagreb, Kroatien, 10000
    - Rekruttering
    - Investigational Site Number : 1910001
  - Zagreb, Kroatien, 10000
    - Rekruttering
    - Investigational Site Number : 1910002
  - Zagreb, Kroatien, 10000
    - Rekruttering
    - Investigational Site Number : 1910003
Kuwait
- - Kuwait City, Kuwait
    - Afsluttet
    - Investigational Site Number : 154225
Libanon
- - Beirut, Libanon
    - Rekruttering
    - Investigational Site Number : 4220004
  - Beirut, Libanon, 166830
    - Rekruttering
    - Investigational Site Number : 422001
Litauen
- - Vilnius, Litauen, 08661
    - Rekruttering
    - Investigational Site Number : 154237
Malaysia
- - Kuala Lumpur, Malaysia, 59100
    - Rekruttering
    - Investigational Site Number : 458002
  - Kuala Lumpur, Malaysia, 50586
    - Rekruttering
    - Investigational Site Number : 458001
Pakistan
- - Karachi, Pakistan
    - Rekruttering
    - Investigational Site Number : 154264
  - Lahore, Pakistan
    - Rekruttering
    - Investigational Site Number : 154266
Peru
- - Arequipa, Peru
    - Afsluttet
    - Investigational Site Number : 604001
Polen
- - Warsaw, Polen, 04-730
    - Rekruttering
    - Investigational Site Number : 150575
Portugal
- - Coimbra, Portugal, 3040-081
    - Rekruttering
    - Investigational Site Number : 620003
  - Lisbon, Portugal, 1649-035
    - Rekruttering
    - Investigational Site Number : 620004
  - Ponta Delgada, Portugal, 9500-370
    - Rekruttering
    - Investigational Site Number : 620009
Rumænien
- - Cluj-Napoca, Rumænien, 400006
    - Rekruttering
    - Investigational Site Number : 642001
  - Cluj-Napoca, Rumænien, 400006
    - Afsluttet
    - Investigational Site Number : 151188
  - Cluj-Napoca, Rumænien, 400006
    - Rekruttering
    - Investigational Site Number : 642002
Rusland
- - Moscow, Rusland
    - Rekruttering
    - Investigational Site Number : 643001
  - Saint Petersburg, Rusland
    - Rekruttering
    - Investigational Site Number : 643002
Saudi Arabien
- - Al-Hasa, Saudi Arabien, 31982
    - Rekruttering
    - Investigational Site Number : 682002
  - Jeddah, Saudi Arabien
    - Afsluttet
    - Investigational Site Number : 682003
  - Mecca, Saudi Arabien, 24246
    - Rekruttering
    - Investigational Site Number : 682004
Schweiz
- - Aarau, Schweiz, 5001
    - Rekruttering
    - Investigational Site Number : 157237
  - Bern, Schweiz, 3010
    - Rekruttering
    - Investigational Site Number : 157045
  - Lausanne, Schweiz, 1011
    - Rekruttering
    - Investigational Site Number : 157244
  - Zurich, Schweiz, 8057
    - Rekruttering
    - Investigational Site Number : 157241
Serbien
- - Belgrade, Serbien, 11000
    - Rekruttering
    - Investigational Site Number : 688001
  - Belgrade, Serbien, 11000
    - Rekruttering
    - Investigational Site Number : 688002
  - Belgrade, Serbien, 11000
    - Rekruttering
    - Investigational Site Number : 688005
  - Belgrade, Serbien, 11080
    - Rekruttering
    - Investigational Site Number : 688003
  - Niš, Serbien, 18000
    - Rekruttering
    - Investigational Site Number : 688004
Singapore
- - Singapore, Singapore, 229899
    - Rekruttering
    - Investigational Site Number : 702001
Slovakiet
- - Bratislava, Slovakiet, 833 40
    - Afsluttet
    - Investigational Site Number : 703001
Spanien
- - Madrid, Spanien, 28007
    - Rekruttering
    - Investigational Site Number : 154163
  - Madrid, Spanien, 28007
    - Rekruttering
    - Investigational Site Number : 154236
  - Madrid, Spanien, 28034
    - Rekruttering
    - Investigational Site Number : 151524
  - Madrid, Spanien, 28041
    - Rekruttering
    - Investigational Site Number : 154199
  - Madrid, Spanien, 28046
    - Rekruttering
    - Investigational Site Number : 154160
  - Madrid, Spanien, 28040
    - Afsluttet
    - Investigational Site Number : 153251
  - Sabadell, Spanien, 08208
    - Rekruttering
    - Investigational Site Number : 154145
  - Valencia, Spanien, 46026
    - Rekruttering
    - Investigational Site Number : 154205
  - Zaragoza, Spanien, 50006
    - Rekruttering
    - Investigational Site Number : 154238
  - Zaragoza, Spanien, 50009
    - Rekruttering
    - Investigational Site Number : 153216
- A Coruña [La Coruña]
  - A Coruña, A Coruña [La Coruña], Spanien, 15006
    - Afsluttet
    - Investigational Site Number : 154146
- Barcelona [Barcelona]
  - Barcelona, Barcelona [Barcelona], Spanien, 08035
    - Rekruttering
    - Investigational Site Number : 153237
  - Barcelona, Barcelona [Barcelona], Spanien, 08035
    - Rekruttering
    - Investigational Site Number : 154147
- Madrid
  - Alcorcón, Madrid, Spanien, 28922
    - Rekruttering
    - Investigational Site Number : 154119
- Pontevedra [Pontevedra]
  - Vigo, Pontevedra [Pontevedra], Spanien, 36200
    - Rekruttering
    - Investigational Site Number : 153213
- Sevilla
  - Seville, Sevilla, Spanien, 41013
    - Rekruttering
    - Investigational Site Number : 153215
  - Seville, Sevilla, Spanien, 41013
    - Rekruttering
    - Investigational Site Number : 153219
Sverige
- - Borås, Sverige, 501 82
    - Afsluttet
    - Investigational Site Number : 154095
  - Malmo, Sverige, 205 02
    - Aktiv, ikke rekrutterende
    - Investigational Site Number : 151726
  - Norrköping, Sverige, 601 82
    - Rekruttering
    - Investigational Site Number : 154092
Sydafrika
- - Durban, Sydafrika, 4001
    - Rekruttering
    - Investigational Site Number : 154138
  - Johannesburg, Sydafrika
    - Rekruttering
    - Investigational Site Number : 710-003
  - Johannesburg, Sydafrika, 2057
    - Rekruttering
    - Investigational Site Number : 150346
Sydkorea
- - Daejeon, Sydkorea
    - Rekruttering
    - Investigational Site Number : 153191
  - Seoul, Sydkorea
    - Rekruttering
    - Investigational Site Number : 153212
- Gyeongsangnam-do
  - Yangsan, Gyeongsangnam-do, Sydkorea, 50612
    - Afsluttet
    - Investigational Site Number : 154208
- Seoul-teukbyeolsi
  - Seoul, Seoul-teukbyeolsi, Sydkorea, 03080
    - Rekruttering
    - Investigational Site Number : 153180
  - Seoul, Seoul-teukbyeolsi, Sydkorea, 03080
    - Rekruttering
    - Investigational Site Number : 153196
  - Seoul, Seoul-teukbyeolsi, Sydkorea, 05505
    - Rekruttering
    - Investigational Site Number : 151149
  - Seoul, Seoul-teukbyeolsi, Sydkorea, 06973
    - Rekruttering
    - Investigational Site Number : 153222
Taiwan
- - Chiayi City, Taiwan
    - Rekruttering
    - Investigational Site Number : 151500
  - Chiayi City, Taiwan
    - Rekruttering
    - Investigational Site Number : 154093
  - Hualien City, Taiwan, 970
    - Rekruttering
    - Investigational Site Number : 152152
  - Kaohsiung City, Taiwan, 833
    - Rekruttering
    - Investigational Site Number : 152246
  - Kaohsiung City, Taiwan, 807
    - Afsluttet
    - Investigational Site Number : 152244
  - New Taipei City, Taiwan, 231
    - Rekruttering
    - Investigational Site Number : 151534
  - Taichung, Taiwan, 404
    - Rekruttering
    - Investigational Site Number : 151179
  - Taichung, Taiwan, 411
    - Rekruttering
    - Investigational Site Number : 151181
  - Tainan, Taiwan, 704
    - Rekruttering
    - Investigational Site Number : 153248
  - Tainan, Taiwan, 710
    - Rekruttering
    - Investigational Site Number : 152153
  - Taipei, Taiwan, 112
    - Rekruttering
    - Investigational Site Number : 152226
  - Taipei, Taiwan, 100
    - Rekruttering
    - Investigational Site Number : 151182
  - Taipei, Taiwan, 104
    - Rekruttering
    - Investigational Site Number : 152321
  - Tao Yuan County, Taiwan, 333
    - Rekruttering
    - Investigational Site Number : 153158
Thailand
- - Bangkok, Thailand, 10400
    - Rekruttering
    - Investigational Site Number : 764003
  - Bangkok, Thailand, 10700
    - Rekruttering
    - Investigational Site Number : 764004
  - Bangkok, Thailand
    - Rekruttering
    - Investigational Site Number : 764001
  - Khon Kaen, Thailand, 40002
    - Rekruttering
    - Investigational Site Number : 764005
Tjekkiet
- - Prague, Tjekkiet, 12808
    - Rekruttering
    - Investigational Site Number : 150809
Tyrkiet (Türkiye)
- - Adana, Tyrkiet (Türkiye), 01330
    - Rekruttering
    - Investigational Site Number : 792006
  - Ankara, Tyrkiet (Türkiye), 06620
    - Rekruttering
    - Investigational Site Number : 792005
  - Ankara, Tyrkiet (Türkiye)
    - Rekruttering
    - Investigational Site Number : 792001
  - Ankara, Tyrkiet (Türkiye), 06230
    - Afsluttet
    - Investigational Site Number : 792002
  - Istanbul, Tyrkiet (Türkiye)
    - Rekruttering
    - Investigational Site Number : 792004
  - Izmir, Tyrkiet (Türkiye)
    - Rekruttering
    - Investigational Site Number : 792007
  - Malatya, Tyrkiet (Türkiye)
    - Afsluttet
    - Investigational Site Number : 792003
Tyskland
- - Berlin, Tyskland, 13353
    - Rekruttering
    - Investigational Site Number : 151686
  - Düsseldorf, Tyskland, 40225
    - Rekruttering
    - Investigational Site Number : 150783
  - Giessen, Tyskland, 35392
    - Rekruttering
    - Investigational Site Number : 154150
  - Hamburg, Tyskland, 20099
    - Rekruttering
    - Investigational Site Number : 151369
  - Hamburg, Tyskland, 20246
    - Afsluttet
    - Investigational Site Number : 151368
  - Mainz, Tyskland, 55131
    - Rekruttering
    - Investigational Site Number : 150031
  - Oberhausen, Tyskland, 46045
    - Afsluttet
    - Investigational Site Number : 150432
Ungarn
- - Budapest, Ungarn, H-1097
    - Rekruttering
    - Investigational Site Number : 3480006
  - Létavértes, Ungarn, 4281
    - Rekruttering
    - Investigational Site Number : 3480003
  - Nyiregyháza, Ungarn, 4400
    - Rekruttering
    - Investigational Site Number : 3480007
  - Székesfehérvár, Ungarn, 8000
    - Rekruttering
    - Investigational Site Number : 3480008
Vietnam
- - Hanoi, Vietnam
    - Rekruttering
    - Investigational Site Number : 154212
  - Ho Chi Minh City, Vietnam, 70000
    - Rekruttering
    - Investigational Site Number : 704002

Deltagelseskriterier

Forskere leder efter personer, der passer til en bestemt beskrivelse, kaldet berettigelseskriterier. Nogle eksempler på disse kriterier er en persons generelle helbredstilstand eller tidligere behandlinger.

Berettigelseskriterier

Aldre berettiget til at studere

Barn
Voksen
Ældre voksen

Tager imod sunde frivillige

Ingen

Prøveudtagningsmetode

Ikke-sandsynlighedsprøve

Studiebefolkning

Alle patienter med en bekræftet diagnose af Gauchers sygdom er berettiget til optagelse i ICGG Gaucher Registry.

For Gaucher-graviditetsunderregistret: Det anbefales, at der indsamles graviditetsdata for alle kvalificerede kvinder uanset spædbørns tilmelding. I tilfælde af flere graviditeter opfordres der til dataindsamling for hver enkelt graviditet for alle kvinder, der er tilmeldt dette underregister.

Beskrivelse

Inklusionskriterier:

ICGG Gaucher Registry

Alle patienter med en bekræftet diagnose af Gauchers sygdom er berettiget til optagelse i registret. Bekræftet diagnose defineres som en dokumenteret β-glucocerebrosidase-mangel og/eller mutation i β-glucocerebrosidase-genet.
For alle patienter vil der blive indhentet passende patientautorisation.

Gauchers graviditetsunderregister:

være tilmeldt ICGG Gaucher Registry.
være gravid eller har været gravid med passende medicinsk dokumentation tilgængelig.
give et underskrevet informeret samtykke og autorisationsformular(er) til at deltage i underregistret, før enhver underregistreringsrelateret dataindsamling udføres.

Ekskluderingskriterier:

- Ingen udelukkelseskriterier for deltagelse i ICGG Gaucher Registry and Sub-Registry.

Studieplan

Dette afsnit indeholder detaljer om studieplanen, herunder hvordan undersøgelsen er designet, og hvad undersøgelsen måler.

Hvordan er undersøgelsen tilrettelagt?

Design detaljer

Observationsmodeller: Kohorte
Tidsperspektiver: Fremadrettet

Antal grupper/kohorter

Kohorter og interventioner

Gruppe / kohorte
Patienter i ICGG Gaucher Registry Der gives ingen eksperimentel intervention. En patient med Gauchers sygdom vil gennemgå kliniske vurderinger og modtage standardbehandling som bestemt af patientens læge.
Gravide kvinder med bekræftet diagnose af Gauchers sygdom Der gives ingen eksperimentel intervention. Gravide kvinder med bekræftet diagnose af Gauchers sygdom, som deltager i ICGG Gaucher Registry og har givet sit samtykke til at deltage i Gaucher Pregnancy Sub-registret, uanset om hun modtager sygdomsspecifik behandling og uanset det kommercielle produkt, hun kan behandles med .

Hvad måler undersøgelsen?

Primære resultatmål

Resultatmål	Tidsramme
ICGG Gaucher Registry: At give Gauchers medicinske samfund anbefalinger til overvågning af patienter og at levere rapporter om patientresultater for at hjælpe med at optimere patientbehandlingen Tidsramme: 42 år	42 år
Gauchers graviditetsunderregister: Til sporing af graviditetsresultater, herunder komplikationer og spædbarnsvækst, hos alle kvinder med Gauchers sygdom under graviditeten, uanset om de modtager sygdomsspecifik behandling, såsom ERT med imiglucerase Tidsramme: 42 år	42 år

Samarbejdspartnere og efterforskere

Det er her, du vil finde personer og organisationer, der er involveret i denne undersøgelse.

Sponsor

Genzyme, a Sanofi Company

Efterforskere

Studieleder: Study Director, Genzyme, a Sanofi Company

Publikationer og nyttige links

Den person, der er ansvarlig for at indtaste oplysninger om undersøgelsen, leverer frivilligt disse publikationer. Disse kan handle om alt relateret til undersøgelsen.

Generelle publikationer

Datoer for undersøgelser

Disse datoer sporer fremskridtene for indsendelser af undersøgelsesrekord og resumeresultater til ClinicalTrials.gov. Studieregistreringer og rapporterede resultater gennemgås af National Library of Medicine (NLM) for at sikre, at de opfylder specifikke kvalitetskontrolstandarder, før de offentliggøres på den offentlige hjemmeside.

Studer store datoer

Studiestart (Faktiske)

1. april 1991

Primær færdiggørelse (Anslået)

31. januar 2034

Studieafslutning (Anslået)

31. januar 2034

Datoer for studieregistrering

Først indsendt

12. juli 2006

Først indsendt, der opfyldte QC-kriterier

31. juli 2006

Først opslået (Anslået)

1. august 2006

Opdateringer af undersøgelsesjournaler

Sidste opdatering sendt (Faktiske)

14. april 2026

Sidste opdatering indsendt, der opfyldte kvalitetskontrolkriterier

13. april 2026

Sidst verificeret

1. april 2026

Mere information

Begreber relateret til denne undersøgelse

Nøgleord

Yderligere relevante MeSH-vilkår

Andre undersøgelses-id-numre

DIREGC07009
ICGG Gaucher Registry (Anden identifikator: Sanofi)
U1111-1295-5844 (Registry Identifier: ICTRP)

Disse oplysninger blev hentet direkte fra webstedet clinicaltrials.gov uden ændringer. Hvis du har nogen anmodninger om at ændre, fjerne eller opdatere dine undersøgelsesoplysninger, bedes du kontakte register@clinicaltrials.gov. Så snart en ændring er implementeret på clinicaltrials.gov, vil denne også blive opdateret automatisk på vores hjemmeside .