Pompe Disease Registry Protocol

ClinicalTrials.gov ID: NCT00231400

Public ClinicalTrials.gov record NCT00231400. 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, 11:00 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

Pompe Disease Registry

Study identification

NCT ID: NCT00231400
Recruitment status: Recruiting
Study type: Observational
Phase: Not listed
Lead sponsor: Genzyme, a Sanofi Company; Industry
Enrollment: 2,000 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: Sep 14, 2004
Primary completion: Jan 30, 2034
Completion: Jan 30, 2034
Last update posted: Apr 27, 2026

2004 – 2034

United States locations

U.S. sites: 93
U.S. states: 36
U.S. cities: 73

Facility	City	State	ZIP	Site status
University of Alabama at Birmingham- Site Number : 840106	Birmingham	Alabama	35233	Recruiting
Barrow Neurological Institute- Site Number : 840087	Phoenix	Arizona	85013	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	90211	Recruiting
Loma Linda University- Genetics- Site Number : 840070	Loma Linda	California	92354	Completed
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
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
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 Pediatrics- Site Number : 840021	Stanford	California	94305	Recruiting
Children's Hospital Colorado - Aurora- Site Number : 840069	Aurora	Colorado	80045	Completed
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 of Florida College of Medicine- Site Number : 840012	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 : 840011	Chicago	Illinois	60611	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 : 840020	Kansas City	Kansas	66160	Recruiting
University of Louisville - Health Sciences Center- Site Number : 840030	Louisville	Kentucky	40202	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
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 : 840035	Minneapolis	Minnesota	55454	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
Children's Mercy Adelle Hall Campus- Site Number : 840063	Kansas City	Missouri	64108	Completed
Washington University- Site Number : 840100	St Louis	Missouri	63110	Recruiting
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	08103	Terminated
Hackensack Meridian Health - Hackensack University Medical Center- 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
Metropolitan Hospital Center- Site Number : 840110	New York	New York	10029	Recruiting
Mt. Sinai School of Medicine- Site Number : 840005	New York	New York	10029	Recruiting
Columbia University Irving Medical Center- Site Number : 840125	New York	New York	10032	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 Hospital- Site Number : 840065	Charlotte	North Carolina	28232	Recruiting
Duke University Medical Center Genetics Dept- Site Number : 840037	Durham	North Carolina	27710	Recruiting
University of Cincinnati Medical Center- Site Number : 840124	Cincinnati	Ohio	45219	Recruiting
Cincinnati Children's Hospital Medical Center (Cincinnati Children's Hospital)- Site Number : 840041	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
LSD Data Registry Site LLC- Site Number : 840094	Dublin	Ohio	43017	Recruiting
Oregon Health & Science University (OHSU)- Site Number : 840080	Portland	Oregon	97239	Recruiting
Oregon Health & Science University (OHSU)- Site Number : 840095	Portland	Oregon	97239	Terminated
Oregon Health and Scinece University- Site Number : 840038	Portland	Oregon	97239	Terminated
Penn Hershey Medical Center- Site Number : 840061	Hershey	Pennsylvania	17033	Completed
Penn State Health Milton South Hershey Medical Center- Site Number : 840126	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 : 840014	Pittsburgh	Pennsylvania	15224	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 Hospital & Health 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 179 non-U.S. sites.

About this trial record page

What this page shows: Public field values for ClinicalTrials.gov record NCT00231400, 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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The complete protocol, eligibility criteria, and contact information for NCT00231400 live on ClinicalTrials.gov.

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