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Study identifier: NCT00231400 Synced from ClinicalTrials.gov · July 28, 2026
● Recruiting

Pompe Disease Registry Protocol

Condition: Glycogen Storage Disease Type II · Pompe Disease  ·  Sponsor: Genzyme, a Sanofi Company

PhaseN/A
Planned participants2000
Who can joinAll sexes, N/A to no upper limit
Healthy volunteersNo

About this study

The Pompe Registry is a global, multicenter, international, longitudinal, observational, and voluntary program for patients with Pompe disease, designed to track the disease's natural history and outcomes in patients, both treated and not. Data from the Registry are also used to fulfill various global regulatory commitments, to support product development/reimbursement, and for other research and non-research related purposes. The objectives of the Registry are: * To enhance understanding of the variability, progression, identification, and natural history of Pompe disease, with the ultimate goal of better guiding and assessing therapeutic intervention. * To assist the Pompe medical community with the development of recommendations for monitoring patients, and to provide reports on patient outcomes, to optimize patient care. * To characterize the Pompe disease population. * To evaluate the long-term effectiveness of alglucosidase alfa.

This description comes directly from the study's public registry record.

Talk to the study team

Trial Transparency email recommended (Toll free number for US & Canada)  ·  800-633-1610  ·  contact-us@sanofi.com

Pompe Registry HelpLine  ·  617-591-5500

Always discuss trial participation with your own doctor first.

Locations (272)

University of Alabama at Birmingham- Site Number : 840106Birmingham, Alabama, United StatesRecruiting
Barrow Neurological Institute- Site Number : 840087Phoenix, Arizona, United StatesRecruiting
Phoenix Children's Hospital- Site Number : 840003Phoenix, Arizona, United StatesRecruiting
University of Arizona- Site Number : 840015Tucson, Arizona, United StatesRecruiting
Arkansas Children's Hospital- Site Number : 840109Little Rock, Arkansas, United StatesRecruiting
University of Arkansas for Medical Sciences- Site Number : 840113Little Rock, Arkansas, United StatesRecruiting
University of California at Irvine- Site Number : 840036Irvine, California, United StatesRecruiting
Loma Linda University- Genetics- Site Number : 840070Loma Linda, California, United StatesCompleted
Southern California Permanente Medical Group- Site Number : 840108Los Angeles, California, United StatesRecruiting
USC Health Sciences Center Dept of Genetics- Site Number : 840082Los Angeles, California, United StatesCompleted
UCSF Benioff Children's Hospital - Oakland- Site Number : 840029Oakland, California, United StatesCompleted
Children's Hospital of Orange County- Site Number : 840074Orange, California, United StatesRecruiting

+ 260 more locations — full list on the registry record.

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Source record: clinicaltrials.gov/study/NCT00231400