Observes people with Fabry disease over time, including pregnancy
Follows people with Fabry disease through routine care, with pregnancy outcomes tracked.
Plain-language title generated from the registry record
Registry title: Fabry Disease Registry & Pregnancy Sub-registry
Key facts
- Where
- Ann Arbor, Aurora, Baltimore, Baton Rouge, Birmingham, Boston, Charlotte, Charlottesville, Chicago, Cincinnati, Cleveland, Columbia, Columbus, Coral Gables, Coral Springs, Dallas, Danville, Decatur, Detroit, Dublin, Durham, Fairfax, Fort Worth, Gainesville, Grand Rapids, Greenville, Hackensack, Helena, Hershey, Huntington, Indianapolis, Iowa City, Jacksonville, Kansas City, Las Vegas, Little Rock, Los Angeles, Louisville, Milwaukee, Minneapolis, Morristown, Nashville, New Brunswick, New Haven, New Hyde Park, New Orleans, New York, Norfolk, Oakland, Omaha, Orange, Paterson, Philadelphia, Phoenix, Pittsburgh, Portland, Providence, Rochester, Sacramento, Salt Lake City, San Diego, San Francisco, Seattle, Springfield, St Louis, Stanford, Syracuse, Tacoma, Tampa, Tucson, Valhalla, and Washington D.C., United StatesSee the 91 sites
Where in United States
- University Of Michigan Pediatrics- Site Number : 840107Ann Arbor, United StatesTaking people
- University Of Colorado At Denver Genetics- Site Number : 840068Aurora, United StatesTaking people
- BaltimoreBaltimore, United StatesNo longer taking part
- Ochsner Health Center - Baton Rouge- Site Number : 840120Baton Rouge, United StatesTaking people
- University Of Alabama Birmingham- Nephrology- Site Number : 840073Birmingham, United StatesTaking people
- University Of Alabama Birmingham- Nephrology- Site Number : 840018Birmingham, United StatesNo longer taking part
- Boston Children's Hospital- Site Number : 840092Boston, United StatesTaking people
- Brigham & Women's Hospital- Site Number : 840103Boston, United StatesTaking people
- Massachusetts General Hospital-Genetics- Site Number : 840062Boston, United StatesTaking people
- Atrium Health - Carolinas Medical Center- Site Number : 840065Charlotte, United StatesTaking people
- University Of Virginia School Of Medicine-Pediatrics- Site Number : 840078Charlottesville, United StatesNo longer taking part
- Ann & Robert H. Lurie Children's Hospital of Chicago- Site Number : 840013Chicago, United StatesTaking people
- Rush University Medical Center Genetics- Site Number : 840079Chicago, United StatesTaking people
- Cincinnati Children's Hospital Medical Center (Cincinnati Children's Hospital)- Site Number : 840033Cincinnati, United StatesTaking people
- Cleveland Clinic - Cleveland- Site Number : 840048Cleveland, United StatesTaking people
- University Hospitals Cleveland Medical Center- Site Number : 840119Cleveland, United StatesTaking people
- University Of Missouri Health System Department Of Genetics- Site Number : 840031Columbia, United StatesTaking people
- Nationwide Children's Hospital- Site Number : 840091Columbus, United StatesTaking people
- Ohio State University Department Of Genetics- Site Number : 840097Columbus, United StatesNo longer taking part
- University of Miami- Site Number : 840006Coral Gables, United StatesTaking people
- University of Miami Sylvester Comprehensive Cancer Center - Coral Springs- Site Number : 840075Coral Springs, United StatesTaking people
- Baylor Institute of Metabolic Disease- Site Number : 840058Dallas, United StatesTaking people
- Geisinger Medical Center- Site Number : 840111Danville, United StatesTaking people
- Emory University School Of Medicine- Human Genetics- Site Number : 840060Decatur, United StatesTaking people
- Children's Hospital of Michigan- Site Number : 840066Detroit, United StatesTaking people
- Lsd Data Registry Site Llc- Site Number : 840094Dublin, United StatesTaking people
- Duke University Medical Center Genetics Dept- Site Number : 840045Durham, United StatesTaking people
- O & O Alpan- Site Number : 840025Fairfax, United StatesTaking people
- Cook Children's Medical Center- Site Number : 840024Fort Worth, United StatesTaking people
- University Of Florida Dept Of Genetics- Site Number : 840083Gainesville, United StatesTaking people
- Infusion Associates - Grand Rapids- Site Number : 840050Grand Rapids, United StatesTaking people
- Corewell Health - Helen DeVos Children's Hospital (HDVCH)- Site Number : 840019Grand Rapids, United StatesNo longer taking part
- Greenwood Genetic Center - Greenville- Site Number : 840055Greenville, United StatesTaking people
- Joseph M. Sanzari Children'S Hospital- Site Number : 840101Hackensack, United StatesTaking people
- Shodair Children'S Hospital- Site Number : 840090Helena, United StatesNo longer taking part
- Penn State University Medical Center-Neurology- Site Number : 840104Hershey, United StatesTaking people
- NYU Langone Health - Perlmutter Cancer Center - Huntington- Site Number : 840040Huntington, United StatesTaking people
- Indianapolis University School Of Medicine- Site Number : 840027Indianapolis, United StatesTaking people
- University of Iowa- Site Number : 840032Iowa City, United StatesTaking people
- University Of Florida Pediatrics Genetics- Site Number : 840121Jacksonville, United StatesTaking people
- University of Kansas Medical Center- Site Number : 840071Kansas City, United StatesTaking people
- Children's Specialty Center - Las Vegas- Site Number : 840008Las Vegas, United StatesTaking people
- Arkansas Children's Hospital- Site Number : 840109Little Rock, United StatesTaking people
- University of Arkansas for Medical Sciences- Site Number : 840113Little Rock, United StatesTaking people
- Southern California Permanente Medical Group- Site Number : 840108Los Angeles, United StatesTaking people
- University Of California Los Angeles- Site Number : 840088Los Angeles, United StatesTaking people
- Usc Health Sciences Center Dept Of Genetics- Site Number : 840082Los Angeles, United StatesNo longer taking part
- University of Louisville - Health Sciences Center- Site Number : 840030Louisville, United StatesNo longer taking part
- MilwaukeeMilwaukee, United StatesTaking people
- Children's Hospitals and Clinics of Minnesota- Site Number : 840114Minneapolis, United StatesTaking people
- M Health Fairview University of Minnesota Medical Center - West Bank- Site Number : 840076Minneapolis, United StatesTaking people
- Children's Hospitals and Clinics of Minnesota- Site Number : 840046Minneapolis, United StatesNo longer taking part
- Atlantic Health System- Site Number : 840099Morristown, United StatesTaking people
- Vanderbilt University Medical Center - Medical Laboratories- Site Number : 840049Nashville, United StatesTaking people
- Saint Peter's University Hospital - New Brunswick- Site Number : 840016New Brunswick, United StatesTaking people
- Yale University School of Medicine- Site Number : 840047New Haven, United StatesTaking people
- Northwell Health- Site Number : 840102New Hyde Park, United StatesTaking people
- Tulane University School of Medicine- Site Number : 840001New Orleans, United StatesNo longer taking part
- Icahn School of Medicine at Mount Sinai- Site Number : 840080New York, United StatesTaking people
- Metropolitan Hospital Center- Site Number : 840110New York, United StatesTaking people
- Children's Hospital of The King's Daughters- Site Number : 840072Norfolk, United StatesNo longer taking part
- UCSF Benioff Children's Hospital - Oakland- Site Number : 840029Oakland, United StatesNo longer taking part
- University of Nebraska Medical Center- Site Number : 840084Omaha, United StatesTaking people
- Children's Hospital of Orange County- Site Number : 840074Orange, United StatesTaking people
- University of California Irvine Medical Center- Site Number : 840036Orange, United StatesTaking people
- St. Joseph's Regional Medical Center - Paterson- Site Number : 840057Paterson, United StatesTaking people
- Children'S Hospital Of Philadelphia Hup Medical Genetics- Site Number : 840089Philadelphia, United StatesTaking people
- The Children's Hospital of Philadelphia- Site Number : 840034Philadelphia, United StatesTaking people
- Phoenix Children's Hospital- Site Number : 840003Phoenix, United StatesTaking people
- UPMC Children's Hospital of Pittsburgh- Site Number : 840023Pittsburgh, United StatesTaking people
- Maine Medical Partners Pediatric Specialty Care- Site Number : 840064Portland, United StatesTaking people
- Oregon Health & Science University (OHSU)- Site Number : 840116Portland, United StatesTaking people
- Oregon Health & Science University (OHSU)- Site Number : 840038Portland, United StatesNo longer taking part
- Rhode Island Hospital Genetics- Site Number : 840053Providence, United StatesNo longer taking part
- University of Rochester Medical Center- Site Number : 840105Rochester, United StatesNo longer taking part
- Uc Davis Mind Institute- Site Number : 840010Sacramento, United StatesTaking people
- Kaiser Permanente Sacramento Medical Center- Site Number : 840042Sacramento, United StatesNo longer taking part
- University of Utah- Site Number : 840043Salt Lake City, United StatesTaking people
- University of California at San Diego- Site Number : 840007San Diego, United StatesNo longer taking part
- University of California San Francisco - Parnassus Campus- Site Number : 840051San Francisco, United StatesTaking people
- Seattle Children's Hospital- Site Number : 840028Seattle, United StatesTaking people
- University of Washington Medical Center- Site Number : 840059Seattle, United StatesTaking people
- Baystate Medical Center- Site Number : 840002Springfield, United StatesTaking people
- Washington University- Site Number : 840100St Louis, United StatesTaking people
- Stanford University Medical Center- Site Number : 840022Stanford, United StatesTaking people
- SUNY Upstate Medical University - Site Number : 840052Syracuse, United StatesTaking people
- MultiCare Mary Bridge Children's Health Center- Site Number : 840115Tacoma, United StatesTaking people
- University Of Florida-Genetics- Site Number : 840096Tampa, United StatesTaking people
- University of Arizona- Site Number : 840015Tucson, United StatesTaking people
- New York Medical College- Site Number : 840039Valhalla, United StatesTaking people
- Children's National Medical Center - Washington- Site Number : 840067Washington D.C., United StatesTaking people
Questions to ask the study team
- How often do I need to come in, and for how long each time?
- Are travel costs paid?
- Can I keep my own doctor?
- What happens if I want to stop?
Trial details
- Who runs it
- Genzyme, a Sanofi Company
- Trial code
- NCT00196742
- Record updated
- 14 October 2026
- Original description
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.Read full original descriptionShow less
Fabry Disease Registry Protocol
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.
Inclusion: Fabry Registry: All patients with a confirmed diagnosis of Fabry disease who have signed the informed consent and patient authorization form(s) are eligible for inclusion. Confirmed diagnosis is defined as a documented deficiency in plasma or leukocyte αGAL (alpha-galactosidase) enzyme activity and/or mutation(s) in the gene coding for αGAL; Fabry Pregnancy Sub-registry:; Eligible women must:; be enrolled in the Fabry 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.