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Fabry Disease Registry & Pregnancy Sub-registry
Sponsor: Genzyme, a Sanofi Company
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
2026-10-14
Healthy Volunteers
No
Conditions
Locations (284)
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
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
University Of California Los Angeles- 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
University of California Irvine Medical Center- Site Number : 840036
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
University Of Colorado At Denver Genetics- Site Number : 840068
Aurora, Colorado, 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 of Miami- Site Number : 840006
Coral Gables, Florida, United States
University of Miami Sylvester Comprehensive Cancer Center - Coral Springs- 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 Florida-Genetics- Site Number : 840096
Tampa, Florida, United States
Emory University School Of Medicine- Human Genetics- Site Number : 840060
Decatur, Georgia, 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- 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
Corewell Health - Helen DeVos Children's Hospital (HDVCH)- 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
M Health Fairview University of Minnesota Medical Center - West Bank- 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
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 Regional Medical Center - Paterson- Site Number : 840057
Paterson, New Jersey, United States
NYU Langone Health - Perlmutter Cancer Center - Huntington- Site Number : 840040
Huntington, New York, United States
Northwell Health- Site Number : 840102
New Hyde Park, 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
SUNY Upstate Medical University - Site Number : 840052
Syracuse, New York, United States
New York Medical College- Site Number : 840039
Valhalla, New York, United States
Atrium Health - 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 : 840038
Portland, Oregon, United States
Oregon Health & Science University (OHSU)- Site Number : 840116
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
The 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 - Medical Laboratories- Site Number : 840049
Nashville, Tennessee, United States
Baylor Institute of Metabolic Disease- Site Number : 840058
Dallas, Texas, United States
Cook Children's Medical Center- Site Number : 840024
Fort Worth, Texas, United States
University of Utah- 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
MultiCare Mary Bridge Children's Health Center- Site Number : 840115
Tacoma, Washington, United States
Children's Wisconsin- 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 : 032005
Neuquén, Argentina
Investigational Site Number : 153130
San Luis, Argentina