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RECRUITING

NCT00196742

Fabry Disease Registry & Pregnancy Sub-registry

Sponsor: Genzyme, a Sanofi Company

View on ClinicalTrials.gov

Summary

The Fabry Registry is an ongoing, international multi-center, strictly observational program that tracks the routine clinical outcomes for patients with Fabry 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 primary objectives of the Registry are: * To enhance the understanding of the variability, progression, and natural history of Fabry disease, including heterozygous females with the disease; * To assist the Fabry medical community with the development of recommendations for monitoring patients and reports on patient outcomes to help optimize patient care; * To characterize and describe the Fabry population as a whole; * To evaluate the long-term safety and effectiveness of Fabrazyme® Fabry Pregnancy Sub-registry: This Sub-registry is a multicenter, international, longitudinal, observational, and voluntary program designed to track pregnancy outcomes for any pregnant woman enrolled in the Fabry Registry, regardless of whether she is receiving disease-specific therapy (such as enzyme replacement therapy with agalsidase beta) and irrespective of the commercial product with which she may be treated. Data from the Sub-registry are also used to fulfill various global regulatory requirements, to support product development/reimbursement, and for other research and non-research-related purposes. No experimental intervention is given; thus a patient will undergo clinical assessments and receive standard of care treatment as determined by the patient's physician. If a patient consents to this Sub-registry, information about the patient's medical and obstetric history, pregnancy, and birth will be collected, and, if a patient consents to data collection for her infant, data on infant growth through month 36 postpartum will be collected.

Official title: Fabry Disease Registry Protocol

Key Details

Gender

All

Age Range

Any - Any

Study Type

OBSERVATIONAL

Enrollment

9000

Start Date

2001-07-31

Completion Date

2034-01-31

Last Updated

2026-04-01

Healthy Volunteers

Conditions

Fabry Disease

Locations (282)

University of Alabama Birmingham- Nephrology- Site Number : 840018

Birmingham, Alabama, United States

University of Alabama Birmingham- Nephrology- Site Number : 840073

Birmingham, Alabama, United States

Phoenix Children's Hospital- Site Number : 840003

Phoenix, Arizona, United States

University of Arizona- Site Number : 840015

Tucson, Arizona, United States

Arkansas Children's Hospital- Site Number : 840109

Little Rock, Arkansas, United States

University of Arkansas for Medical Sciences- Site Number : 840113

Little Rock, Arkansas, United States

University of California at Irvine- Site Number : 840036

Irvine, California, United States

Southern California Permanente Medical Group- Site Number : 840108

Los Angeles, California, United States

USC Health Sciences Center Dept of Genetics- Site Number : 840082

Los Angeles, California, United States

UCLA School Of Medicine- Site Number : 840088

Los Angeles, California, United States

UCSF Benioff Children's Hospital - Oakland- Site Number : 840029

Oakland, California, United States

Children's Hospital of Orange County- Site Number : 840074

Orange, California, United States

UC Davis MIND Institute- Site Number : 840010

Sacramento, California, United States

Kaiser Permanente Sacramento Medical Center- Site Number : 840042

Sacramento, California, United States

University of California at San Diego- Site Number : 840007

San Diego, California, United States

University of California San Francisco - Parnassus Campus- Site Number : 840051

San Francisco, California, United States

Stanford University Medical Center- Site Number : 840022

Stanford, California, United States

Yale University School of Medicine- Site Number : 840047

New Haven, Connecticut, United States

Children's National Medical Center - Washington- Site Number : 840067

Washington D.C., District of Columbia, United States

University Hematology Oncology- Site Number : 840075

Coral Springs, Florida, United States

University of Florida Dept of Genetics- Site Number : 840083

Gainesville, Florida, United States

University of Florida Pediatrics Genetics- Site Number : 840121

Jacksonville, Florida, United States

University Of Miami SOM- Site Number : 840006

Miami, Florida, United States

University of Florida-Genetics- Site Number : 840096

Tampa, Florida, United States

Emory University School of Medicine- Human Genetics- Site Number : 840060

Decatur, Georgia, United States

University of Colorado at Denver Genetics- Site Number : 840068

Aurora, Illinois, United States

Ann & Robert H. Lurie Children's Hospital of Chicago- Site Number : 840013

Chicago, Illinois, United States

Rush University Medical Center Genetics- Site Number : 840079

Chicago, Illinois, United States

Indianapolis University School of Medicine- Site Number : 840027

Indianapolis, Indiana, United States

University of Iowa- Site Number : 840032

Iowa City, Iowa, United States

University of Kansas Medical Center- Site Number : 840071

Kansas City, Kansas, United States

University of Louisville - Health Sciences Center- Site Number : 840030

Louisville, Kentucky, United States

Ochsner Health Center - Baton Rouge- Site Number : 840120

Baton Rouge, Louisiana, United States

Tulane University School of Medicine- Site Number : 840001

New Orleans, Louisiana, United States

Maine Medical Partners Pediatric Specialty Care- Site Number : 840064

Portland, Maine, United States

John Hopkins- Site Number : 840044

Baltimore, Maryland, United States

Massachusetts General Hospital-Genetics- Site Number : 840062

Boston, Massachusetts, United States

Boston Children's Hospital - PIN- Site Number : 840092

Boston, Massachusetts, United States

Brigham & Women's Hospital- Site Number : 840103

Boston, Massachusetts, United States

Baystate Medical Center- Site Number : 840002

Springfield, Massachusetts, United States

University of Michigan Pediatrics- Site Number : 840107

Ann Arbor, Michigan, United States

Children's Hospital of Michigan- Site Number : 840066

Detroit, Michigan, United States

Spectrum for Health- Site Number : 840019

Grand Rapids, Michigan, United States

Infusion Associates - Grand Rapids- Site Number : 840050

Grand Rapids, Michigan, United States

Children's Hospitals and Clinics of Minnesota- Site Number : 840046

Minneapolis, Minnesota, United States

Children's Hospitals and Clinics of Minnesota- Site Number : 840114

Minneapolis, Minnesota, United States

University of Minnesota Medical Center Pediatrics- Site Number : 840076

Minneapolis, Minnesota, United States

University of Missouri Health System Department of Genetics- Site Number : 840031

Columbia, Missouri, United States

Washington University- Site Number : 840100

St Louis, Missouri, United States

Shodair Children's Hospital- Site Number : 840090

Helena, Montana, United States

University of Nebraska Medical Center- Site Number : 840084

Omaha, Nebraska, United States

Children's Specialty Center - Las Vegas- Site Number : 840008

Las Vegas, Nevada, United States

Cooper Health Center- Site Number : 840098

Camden, New Jersey, United States

Joseph M. Sanzari Children's Hospital- Site Number : 840101

Hackensack, New Jersey, United States

Atlantic Health System- Site Number : 840099

Morristown, New Jersey, United States

Saint Peter's University Hospital - New Brunswick- Site Number : 840016

New Brunswick, New Jersey, United States

St. Joseph's Children's Hospital- Site Number : 840057

Paterson, New Jersey, United States

Northwell Health - Site Number : 840102

Manhasset, New York, United States

New York University School Of Medicine- Site Number : 840040

New York, New York, United States

Icahn School of Medicine at Mount Sinai- Site Number : 840080

New York, New York, United States

Metropolitan Hospital Center- Site Number : 840110

New York, New York, United States

University of Rochester Medical Center- Site Number : 840105

Rochester, New York, United States

State University of New York- Site Number : 840052

Syracuse, New York, United States

New York Medical College- Site Number : 840039

Valhalla, New York, United States

Carolinas Medical Center- Site Number : 840065

Charlotte, North Carolina, United States

Duke University Medical Center Genetics Dept- Site Number : 840045

Durham, North Carolina, United States

Cincinnati Children's Hospital Medical Center (Cincinnati Children's Hospital)- Site Number : 840033

Cincinnati, Ohio, United States

University Hospitals Cleveland Medical Center- Site Number : 840119

Cleveland, Ohio, United States

Cleveland Clinic - Cleveland- Site Number : 840048

Cleveland, Ohio, United States

Nationwide Children's Hospital- Site Number : 840091

Columbus, Ohio, United States

Ohio State University Department of Genetics- Site Number : 840097

Columbus, Ohio, United States

LSD Data Registry Site LLC- Site Number : 840094

Dublin, Ohio, United States

Oregon Health & Science University (OHSU)- Site Number : 840116

Portland, Oregon, United States

Oregon Health and Scinece University- Site Number : 840038

Portland, Oregon, United States

Geisinger Medical Center- Site Number : 840111

Danville, Pennsylvania, United States

Penn State University Medical Center-Neurology- Site Number : 840104

Hershey, Pennsylvania, United States

Children's Hospital of Philadelphia HUP Medical Genetics- Site Number : 840089

Philadelphia, Pennsylvania, United States

Children's Hospital of Philadelphia- Site Number : 840034

Philadelphia, Pennsylvania, United States

UPMC Children's Hospital of Pittsburgh- Site Number : 840023

Pittsburgh, Pennsylvania, United States

Rhode Island Hospital Genetics- Site Number : 840053

Providence, Rhode Island, United States

Greenwood Genetic Center - Greenville- Site Number : 840055

Greenville, South Carolina, United States

Vanderbilt University Medical Center Diagnostic Lab- Site Number : 840049

Nashville, Tennessee, United States

Baylor Institute of Metabolic Disease- Site Number : 840058

Dallas, Texas, United States

Cook Children's Health Care System- Site Number : 840024

Fort Worth, Texas, United States

University of Utah Department of Medical Genetics- Site Number : 840043

Salt Lake City, Utah, United States

University of Virginia School of Medicine-Pediatrics- Site Number : 840078

Charlottesville, Virginia, United States

O & O Alpan- Site Number : 840025

Fairfax, Virginia, United States

Children's Hospital of The King's Daughters- Site Number : 840072

Norfolk, Virginia, United States

Seattle Children's Hospital- Site Number : 840028

Seattle, Washington, United States

University Of Washington Medical Center- Site Number : 840059

Seattle, Washington, United States

Mary Bridge Children's Outpatient Center- Site Number : 840115

Tacoma, Washington, United States

Children's Hospital of Wisconsin-Pediatrics- Site Number : 840054

Milwaukee, Wisconsin, United States

Investigational Site Number : 153280

Berazategui, Buenos Aires, Argentina

Investigational Site Number : 153260

Caba, Buenos Aires, Buenos Aires, Argentina

Investigational Site Number : 153250

San Isidro, Buenos Aires, Argentina

Investigational Site Number : 153194

Catamarca, Catamarca Province, Argentina

Investigational Site Number : 604002

Buenos Aires, Argentina

Investigational Site Number : 153032

Buenos Aires, Argentina

Investigational Site Number : 153172

Buenos Aires, Argentina

Investigational Site Number : 153270

La Rioja Province, Argentina

Investigational Site Number : 032005

Neuquén, Argentina

Investigational Site Number : 153130

San Luis, Argentina

Investigational Site Number : 032004

Santa Fe, Argentina

Investigational Site Number : 036013

Westmead, New South Wales, Australia

Investigational Site Number : 151069

Westmead, New South Wales, Australia

Investigational Site Number : 153063

Brisbane, Queensland, Australia

Investigational Site Number : 151002

Adelaide, South Australia, Australia

Investigational Site Number : 153040

Parkville, Victoria, Australia

Investigational Site Number : 153090

Perth, Western Australia, Australia

Investigational Site Number : 150722

Antwerp, Belgium

Investigational Site Number : 153133

Antwerp, Belgium

Investigational Site Number : 153001

Brussels, Belgium

Investigational Site Number : 0560008

Brussels, Belgium

Investigational Site Number : 150517

Brussels, Belgium

Investigational Site Number : 151668

Leuven, Belgium

Investigational Site Number : 154275

Liège, Belgium

Investigational Site Number : 153100

Seraing, Belgium

NPDM - Núcleo de Pesquisa e Desenvolvimento de Medicamentos- Site Number : 076007

Fortaleza, Ceará, Brazil

Clínica Senhor do Bonfim- Site Number : 076008

Feira de Santana, Estado de Bahia, Brazil

Hospital Geral Universitario de Cuiaba- Site Number : 076006

Cuiabá, Mato Grosso, Brazil

Universidade Federal do Paraná- Site Number : 076004

Curitiba, Paraná, Brazil

Instituto de Medicina Integral Professor Fernando Figueira- Site Number : 076005

Recife, Pernambuco, Brazil

Hospital Universitário Polydoro Ernani de São Thiago - UFSC- Site Number : 076012

Florianópolis, Santa Catarina, Brazil

Hospital e Maternidade Celso Pierro - PUC-Campinas- Site Number : 076013

Campinas, São Paulo, Brazil

Centro de Pesq Materno Infantil de Campinas- Site Number : 076009

Campinas, São Paulo, Brazil

Serviço de Terapia Renal de Ourinhos- Site Number : 076011

Ourinhos, São Paulo, Brazil

Centro Saude Escola Joel Domingos Machado- Site Number : 076002

Ribeirão Preto, São Paulo, Brazil

Instituto de Genética e Erros Inatos do Metabolismo- Site Number : 076001

São Paulo, Brazil

Investigational Site Number : 153169

Sofia, Bulgaria

Investigational Site Number : 100001

Sofia, Bulgaria

Investigational Site Number : 124014

Calgary, Alberta, Canada

Investigational Site Number : 124002

Edmonton, Alberta, Canada

Investigational Site Number : 124010

Vancouver, British Columbia, Canada

Investigational Site Number : 124011

Vancouver, British Columbia, Canada

Investigational Site Number : 124019

Winnipeg, Manitoba, Canada

Investigational Site Number : 124022

Moncton, New Brunswick, Canada

Investigational Site Number : 124023

St. John's, Newfoundland and Labrador, Canada

Investigational Site Number : 124008

Halifax, Nova Scotia, Canada

Investigational Site Number : 124005

Kingston, Ontario, Canada

Investigational Site Number : 124021

London, Ontario, Canada

Investigational Site Number : 124006

Toronto, Ontario, Canada

Investigational Site Number : 124009

Toronto, Ontario, Canada

Investigational Site Number : 124013

Montreal, Quebec, Canada

Investigational Site Number : 124001

Sherbrooke, Quebec, Canada

Investigational Site Number : 152004

Antofagasta, Chile

Investigational Site Number : 152001

Coquimbo, Chile

Investigational Site Number : 152003

Iquique, Chile

Investigational Site Number : 152002

Santiago, Chile

Investigational Site Number : 152005

Vallenar, Chile

Investigational Site Number : 153165

Beijing, China

Investigational Site Number : 1560003

Hangzhou, China

Investigational Site Number : 1560002

Jinan, China

Investigational Site Number : 1560004

Nanjing, China

Investigational Site Number : 153163

Shanghai, China

Investigational Site Number : 1560001

Shanghai, China

Investigational Site Number : 170001

Bogotá, Colombia

Investigational Site Number : 1910001

Rijeka, Croatia

Investigational Site Number : 1910002

Zagreb, Croatia

Investigational Site Number : 153126

Prague, Czechia

Investigational Site Number : 151229

Copenhagen, Denmark

Investigational Site Number : 153041

Copenhagen, Denmark

Investigational Site Number : 153106

Tartu, Estonia

Investigational Site Number : 153024

Turku, Finland

Investigational Site Number : 250005

Bordeaux, France

Investigational Site Number : 250002

Bron, France

Investigational Site Number : 250001

Garches, France

Investigational Site Number : 250007

Lille, France

Investigational Site Number : 250004

Saint-Priest-en-Jarez, France

Investigational Site Number : 250009

Strasbourg, France

Investigational Site Number : 153013

Berlin, Germany

Investigational Site Number : 154150

Giessen, Germany

Investigational Site Number : 153147

Münster, Germany

Investigational Site Number : 153011

Würzburg, Germany

Investigational Site Number : 344001

Kowloon, Hong Kong

Investigational Site Number : 3480002

Budapest, Hungary

Investigational Site Number : 3480003

Létavértes, Hungary

Investigational Site Number : 3480005

Pécs, Hungary

Investigational Site Number : 3480004

Sopron, Hungary

Investigational Site Number : 356003

Ahmedabad, India

Investigational Site Number : 356001

Kolkata, India

Investigational Site Number : 3560004

Secunderabad, India

Investigational Site Number : 356002

Vellore, India

Investigational Site Number : 360001

Jakarta, Indonesia

Investigational Site Number : 380013

Florence, Firenze, Italy

Investigational Site Number : 380009

Milan, Milano, Italy

Investigational Site Number : 380006

Milan, Milano, Italy

Investigational Site Number : 380003

Baggiovara, Modena, Italy

Investigational Site Number : 380010

Monza, Monza E Brianza, Italy

Investigational Site Number : 380008

Naples, Napoli, Italy

Investigational Site Number : 157282

Padua, Padova, Italy

Investigational Site Number : 380012

Rome, Roma, Italy

Investigational Site Number : 380002

Bassano del Grappa, Italy

Investigational Site Number : 380019

Bologna, Italy

Investigational Site Number : 380004

Florence, Italy

Investigational Site Number : 380014

Ragusa, Italy

Investigational Site Number : 380007

Rimini, Italy

Investigational Site Number : 380011

Torino, Italy

Investigational Site Number : 380001

Udine, Italy

Investigational Site Number : 392007

Kobe, Hyōgo, Japan

Investigational Site Number : 153201

Nankoku, Kochi, Japan

Investigational Site Number : 153217

Chiba, Japan

Investigational Site Number : 392006

Niigata, Japan

Investigational Site Number : 153205

Osaka, Japan

Investigational Site Number : 153204

Tokyo, Japan

Investigational Site Number : 154244

Vilnius, Lithuania

Investigational Site Number : 154652

Vilnius, Lithuania

Investigational Site Number : 458001

Kuala Lumpur, Malaysia

Investigational Site Number : 458002

Kuala Lumpur, Malaysia

Investigational Site Number : 151171

Amsterdam, Netherlands

Investigational Site Number : 153004

Amsterdam, Netherlands

Investigational Site Number : 153141

Bergen, Norway

Investigational Site Number : 604001

Lima, Peru

Investigational Site Number : 608001

City of Muntinlupa, Philippines

Investigational Site Number : 150575

Warsaw, Poland

Investigational Site Number : 620005

Lisbon, Portugal

Investigational Site Number : 620001

Porto, Portugal

Investigational Site Number : 154164

Brasov, Romania

Investigational Site Number : 154099

Bucharest, Romania

Investigational Site Number : 153081

Cluj-Napoca, Romania

Investigational Site Number : 643001

Moscow, Russia

Investigational Site Number : 643003

Nizhny Novgorod, Russia

Investigational Site Number : 643002

Saint Petersburg, Russia

Investigational Site Number : 682002

Al-Hasa, Saudi Arabia

Investigational Site Number : 6880001

Novi Sad, Serbia

Investigational Site Number : 702001

Singapore, Singapore

Investigational Site Number : 703001

Bratislava, Slovakia

Investigational Site Number : 705001

Nové Zámky, Slovakia

Investigational Site Number : 154273

Suwon, Gyeonggi-do, South Korea

Investigational Site Number : 153178

Yangsan, Gyeongsangnam-do, South Korea

Investigational Site Number : 154208

Yangsan, Gyeongsangnam-do, South Korea

Investigational Site Number : 157176

Yangsan, Gyeongsangnam-do, South Korea

Investigational Site Number : 153228

Jeju City, Jeju-teukbyeoljachido, South Korea

Investigational Site Number : 153180