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Recruiting No phase listed Observational

Fabry Disease Registry & Pregnancy Sub-registry

ClinicalTrials.gov ID: NCT00196742

Public ClinicalTrials.gov record NCT00196742. Field values are reproduced from the official study page; the official ClinicalTrials.gov record remains the source of truth for eligibility, enrollment, and contact information.

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ClinicalTrials.gov public records Last synced Apr 29, 2026, 9:32 AM EDT

Data is sourced from official ClinicalTrials.gov public API records. Always review the official ClinicalTrials.gov record for the latest information.

Official title

Fabry Disease Registry Protocol

Study identification

NCT ID
NCT00196742
Recruitment status
Recruiting
Study type
Observational
Phase
Not listed
Lead sponsor
Genzyme, a Sanofi Company
Industry
Enrollment
9,000 participants

Conditions and interventions

Conditions

Interventions

Not listed

Eligibility (public fields only)

Age range
Not listed
Sex
All
Healthy volunteers
Healthy volunteers not accepted

This page does not interpret eligibility. Detailed inclusion and exclusion criteria are on the official ClinicalTrials.gov record.

Study timeline

Start date
Jul 30, 2001
Primary completion
Jan 30, 2034
Completion
Jan 30, 2034
Last update posted
Apr 27, 2026

2001 – 2034

United States locations

U.S. sites
92
U.S. states
37
U.S. cities
75
Facility City State ZIP Site status
University of Alabama Birmingham- Nephrology- Site Number : 840018 Birmingham Alabama 35294 Completed
University of Alabama Birmingham- Nephrology- Site Number : 840073 Birmingham Alabama 35294 Recruiting
Phoenix Children's Hospital- Site Number : 840003 Phoenix Arizona 85016 Recruiting
University of Arizona- Site Number : 840015 Tucson Arizona 85724 Recruiting
Arkansas Children's Hospital- Site Number : 840109 Little Rock Arkansas 72202 Recruiting
University of Arkansas for Medical Sciences- Site Number : 840113 Little Rock Arkansas 72205 Recruiting
University of California at Irvine- Site Number : 840036 Irvine California 92697 Recruiting
Southern California Permanente Medical Group- Site Number : 840108 Los Angeles California 90027 Recruiting
USC Health Sciences Center Dept of Genetics- Site Number : 840082 Los Angeles California 90033 Completed
UCLA School Of Medicine- Site Number : 840088 Los Angeles California 90095 Recruiting
UCSF Benioff Children's Hospital - Oakland- Site Number : 840029 Oakland California 94609 Completed
Children's Hospital of Orange County- Site Number : 840074 Orange California 92868 Recruiting
UC Davis MIND Institute- Site Number : 840010 Sacramento California 95817 Recruiting
Kaiser Permanente Sacramento Medical Center- Site Number : 840042 Sacramento California 95825 Completed
University of California at San Diego- Site Number : 840007 San Diego California 92093 Completed
University of California San Francisco - Parnassus Campus- Site Number : 840051 San Francisco California 94143 Recruiting
Stanford University Medical Center- Site Number : 840022 Stanford California 94305 Recruiting
Yale University School of Medicine- Site Number : 840047 New Haven Connecticut 06510 Recruiting
Children's National Medical Center - Washington- Site Number : 840067 Washington D.C. District of Columbia 20010 Recruiting
University Hematology Oncology- Site Number : 840075 Coral Springs Florida 33065 Recruiting
University of Florida Dept of Genetics- Site Number : 840083 Gainesville Florida 32610 Recruiting
University of Florida Pediatrics Genetics- Site Number : 840121 Jacksonville Florida 32207 Recruiting
University Of Miami SOM- Site Number : 840006 Miami Florida 33136 Recruiting
University of Florida-Genetics- Site Number : 840096 Tampa Florida 33606 Recruiting
Emory University School of Medicine- Human Genetics- Site Number : 840060 Decatur Georgia 30033 Recruiting
University of Colorado at Denver Genetics- Site Number : 840068 Aurora Illinois 80045 Recruiting
Ann & Robert H. Lurie Children's Hospital of Chicago- Site Number : 840013 Chicago Illinois 60611 Recruiting
Rush University Medical Center Genetics- Site Number : 840079 Chicago Illinois 60612 Recruiting
Indianapolis University School of Medicine- Site Number : 840027 Indianapolis Indiana 46202 Recruiting
University of Iowa- Site Number : 840032 Iowa City Iowa 52242 Recruiting
University Of Kansas Medical Center- Site Number : 840071 Kansas City Kansas 66160 Recruiting
University of Louisville - Health Sciences Center- Site Number : 840030 Louisville Kentucky 40202 Completed
Ochsner Health Center - Baton Rouge- Site Number : 840120 Baton Rouge Louisiana 70809 Recruiting
Tulane University School of Medicine- Site Number : 840001 New Orleans Louisiana 70112 Completed
Maine Medical Partners Pediatric Specialty Care- Site Number : 840064 Portland Maine 04102 Recruiting
John Hopkins- Site Number : 840044 Baltimore Maryland 21205 Completed
Massachusetts General Hospital-Genetics- Site Number : 840062 Boston Massachusetts 02114 Recruiting
Boston Children's Hospital - PIN- Site Number : 840092 Boston Massachusetts 02115 Recruiting
Brigham & Women's Hospital- Site Number : 840103 Boston Massachusetts 02115 Recruiting
Baystate Medical Center- Site Number : 840002 Springfield Massachusetts 01199 Recruiting
University of Michigan Pediatrics- Site Number : 840107 Ann Arbor Michigan 48109 Recruiting
Children's Hospital of Michigan- Site Number : 840066 Detroit Michigan 48201 Recruiting
Corewell Health - Helen DeVos Children's Hospital (HDVCH)- Site Number : 840019 Grand Rapids Michigan 49503 Completed
Infusion Associates - Grand Rapids- Site Number : 840050 Grand Rapids Michigan 49525 Recruiting
Children's Hospitals and Clinics of Minnesota- Site Number : 840046 Minneapolis Minnesota 55404 Completed
Children's Hospitals and Clinics of Minnesota- Site Number : 840114 Minneapolis Minnesota 55404 Recruiting
M Health Fairview University of Minnesota Medical Center - West Bank- Site Number : 840076 Minneapolis Minnesota 55454 Recruiting
University of Missouri Health System Department of Genetics- Site Number : 840031 Columbia Missouri 65212 Recruiting
Washington University- Site Number : 840100 St Louis Missouri 63110 Recruiting
Shodair Children's Hospital- Site Number : 840090 Helena Montana 59601 Completed
University of Nebraska Medical Center- Site Number : 840084 Omaha Nebraska 68198 Recruiting
Children's Specialty Center - Las Vegas- Site Number : 840008 Las Vegas Nevada 89109 Recruiting
Cooper Health Center- Site Number : 840098 Camden New Jersey — Terminated
Joseph M. Sanzari Children's Hospital- Site Number : 840101 Hackensack New Jersey 07601 Recruiting
Atlantic Health System- Site Number : 840099 Morristown New Jersey 07962 Recruiting
Saint Peter's University Hospital - New Brunswick- Site Number : 840016 New Brunswick New Jersey 08901 Recruiting
St. Joseph's Children's Hospital- Site Number : 840057 Paterson New Jersey 07503 Recruiting
NYU Langone Health - Perlmutter Cancer Center - Huntington- Site Number : 840040 Huntington New York 11743 Recruiting
Northwell Health- Site Number : 840102 New Hyde Park New York 11042 Recruiting
Icahn School of Medicine at Mount Sinai- Site Number : 840080 New York New York 10029 Recruiting
Metropolitan Hospital Center- Site Number : 840110 New York New York 10029 Recruiting
University of Rochester Medical Center- Site Number : 840105 Rochester New York 14642 Completed
SUNY Upstate Medical University - Site Number : 840052 Syracuse New York 13210 Recruiting
New York Medical College- Site Number : 840039 Valhalla New York 10595 Recruiting
Carolinas Medical Center- Site Number : 840065 Charlotte North Carolina 28232 Recruiting
Duke University Medical Center Genetics Dept- Site Number : 840045 Durham North Carolina 27710 Recruiting
Cincinnati Children's Hospital Medical Center (Cincinnati Children's Hospital)- Site Number : 840033 Cincinnati Ohio 45229 Recruiting
University Hospitals Cleveland Medical Center- Site Number : 840119 Cleveland Ohio 44106 Recruiting
Cleveland Clinic - Cleveland- Site Number : 840048 Cleveland Ohio 44195 Recruiting
Nationwide Children's Hospital- Site Number : 840091 Columbus Ohio 43205 Recruiting
Ohio State University Department of Genetics- Site Number : 840097 Columbus Ohio 43210 Active, not recruiting
LSD Data Registry Site LLC- Site Number : 840094 Dublin Ohio 43017 Recruiting
Oregon Health & Science University (OHSU)- Site Number : 840116 Portland Oregon 97239 Recruiting
Oregon Health and Scinece University- Site Number : 840038 Portland Oregon 97239 Terminated
Geisinger Medical Center- Site Number : 840111 Danville Pennsylvania 17822 Recruiting
Penn State University Medical Center-Neurology- Site Number : 840104 Hershey Pennsylvania 17033 Recruiting
Children's Hospital of Philadelphia HUP Medical Genetics- Site Number : 840089 Philadelphia Pennsylvania 19104 Recruiting
Children's Hospital of Philadelphia- Site Number : 840034 Philadelphia Pennsylvania 19104 Recruiting
UPMC Children's Hospital of Pittsburgh- Site Number : 840023 Pittsburgh Pennsylvania 15224 Recruiting
Rhode Island Hospital Genetics- Site Number : 840053 Providence Rhode Island 02903 Completed
Greenwood Genetic Center - Greenville- Site Number : 840055 Greenville South Carolina 29605 Recruiting
Vanderbilt University Medical Center Diagnostic Lab- Site Number : 840049 Nashville Tennessee 37212 Recruiting
Baylor Institute of Metabolic Disease- Site Number : 840058 Dallas Texas 75226 Recruiting
Cook Children's Health Care System- Site Number : 840024 Fort Worth Texas 76104 Recruiting
University of Utah Department of Medical Genetics- Site Number : 840043 Salt Lake City Utah 84132 Recruiting
University of Virginia School of Medicine-Pediatrics- Site Number : 840078 Charlottesville Virginia 22908 Completed
O & O Alpan- Site Number : 840025 Fairfax Virginia 22030 Recruiting
Children's Hospital of The King's Daughters- Site Number : 840072 Norfolk Virginia 23507 Completed
Seattle Children's Hospital- Site Number : 840028 Seattle Washington 98105 Recruiting
University Of Washington Medical Center- Site Number : 840059 Seattle Washington 98195 Recruiting
Mary Bridge Children's Outpatient Center- Site Number : 840115 Tacoma Washington 98405 Recruiting
Children's Hospital of Wisconsin-Pediatrics- Site Number : 840054 Milwaukee Wisconsin 53226 Recruiting

Site contact phone numbers, emails, and investigator names are intentionally not displayed here. Open the official ClinicalTrials.gov record for site contact information.

Non-U.S. locations

This page focuses on the U.S. directory. The official record also lists 191 non-U.S. sites.

About this trial record page

What this page shows
Public field values for ClinicalTrials.gov record NCT00196742, including study identification, conditions, interventions, eligibility (age, sex, healthy volunteer), timeline, and U.S. site list.
What this page does not do
No medical advice, eligibility judgments, treatment recommendations, study quality scoring, or AI-generated medical summaries. No site contact phone numbers, emails, or investigator names.
Where the data comes from
Sourced from the official ClinicalTrials.gov public API. The official record is the source of truth.
Last refresh
Last update posted Apr 27, 2026 · Synced Apr 29, 2026

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Open the official record

The complete protocol, eligibility criteria, and contact information for NCT00196742 live on ClinicalTrials.gov.

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