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Pompe Disease Registry Protocol

Recruiting · NCT00231400

Conditions: Glycogen Storage Disease Type II, Pompe Disease

At a glance

Research payments reported, 2025
$431,788
U.S. investigators named
51
Sites paid
60
Planned or actual enrollment
2,000

About the trial

Sponsor
Genzyme, a Sanofi Company
Dates
Started 2004-09-15; completion 2034-01-31
Results posted
Not yet

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 commu…

From ClinicalTrials.gov, last updated 2026-10-28. Full record, eligibility and contacts (opens in a new tab)

Industry funding

Sanofi US Services Inc. reported $431,788 in research payments for this study in 2025 (145 payments).

Products named: Lumizyme

Research payments usually go to hospitals, universities and research sites to run a study, not to the investigators personally. A payment is not evidence of wrongdoing.

U.S. investigators named on this study

Clinicians the company named as principal investigators in its Open Payments reports.

Sites paid to run it

Sources: CMS Open Payments research payments (program year 2025) and ClinicalTrials.gov, U.S. National Library of Medicine.