Actively Recruiting
Pompe Pregnancy Sub-Registry
Led by Genzyme, a Sanofi Company · Updated on 2026-04-16
20
Participants Needed
35
Research Sites
1389 weeks
Total Duration
On this page
AI-Summary
What this Trial Is About
This Sub-registry is a multicenter, international, longitudinal, observational, and voluntary program designed to track pregnancy outcomes for any pregnant woman enrolled in the Pompe Registry, regardless of whether she is receiving disease-specific therapy (such as ERT with alglucosidase alfa or avalglucosidase alfa) and irrespective of the commercial product with which she may be treated. 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. The primary objective of this Sub-registry is to track pregnancy outcomes, including complications and infant growth, in all women with Pompe disease during pregnancy, regardless of whether they receive disease-specific therapy, such as ERT with alglucosidase alfa or avalglucosidase alfa.
CONDITIONS
Official Title
Pompe Pregnancy Sub-Registry
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Be enrolled in the Pompe Registry (NCT00231400)
- Be pregnant or have been pregnant with appropriate medical documentation available
- Provide signed informed consent and authorization forms before any data collection
You will not qualify if you...
History of severe allergic reactions to study medication Currently pregnant or breastfeeding Recent participation in another clinical trial within the last 30 days Presence of uncontrolled medical conditions that could affect safety
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Trial Site Locations
Total: 35 locations
1
Barrow Neurol Group- Site Number : 840087
Phoenix, Arizona, United States, 85013
Actively Recruiting
2
University of Florida Pediatrics Genetics- Site Number : 157138
Jacksonville, Florida, United States, 32207
Actively Recruiting
3
Emory University School Of Medicine- Site Number : 840060
Atlanta, Georgia, United States, 30322
Actively Recruiting
4
Indianapolis University School of Medicine- Site Number : 840027
Indianapolis, Indiana, United States, 46202
Actively Recruiting
5
University of Iowa- Site Number : 150294
Iowa City, Iowa, United States, 52242-1009
Actively Recruiting
6
Spectrum for Health- Site Number : 840019
Grand Rapids, Michigan, United States, 49503
Actively Recruiting
7
Washington University- Site Number : 150612
St Louis, Missouri, United States, 63110
Actively Recruiting
8
New York University School Of Medicine- Site Number : 840040
New York, New York, United States, 10016
Actively Recruiting
9
Mt. Sinai School of Medicine- Site Number : 840005
New York, New York, United States, 10029
Actively Recruiting
10
Columbia University Irving Medical Center- Site Number : 157199
New York, New York, United States, 10032
Actively Recruiting
11
Duke University Medical Center Genetics Dept- Site Number : 840037
Durham, North Carolina, United States, 27710
Actively Recruiting
12
LSD Data Registry Site LLC- Site Number : 840094
Dublin, Ohio, United States, 43017
Actively Recruiting
13
Oregon Health and Science University- Site Number : 840095
Portland, Oregon, United States, 97239
Completed
14
Greenwood Genetic Center - Greenville- Site Number : 151184
Greenville, South Carolina, United States, 29605
Actively Recruiting
15
O & O Alpan- Site Number : 840025
Fairfax, Virginia, United States, 22030
Actively Recruiting
16
Investigational Site Number : 151069
Westmead, New South Wales, Australia, 2145
Actively Recruiting
17
Investigational Site Number : 056001
Ghent, Belgium, 9000
Actively Recruiting
18
Instituto de Genética e Erros Inatos do Metabolismo- Site Number : 150978
São Paulo, Brazil, 04020-041
Actively Recruiting
19
Investigational Site Number : 1910001
Zagreb, Croatia, 10000
Actively Recruiting
20
Investigational Site Number : 1910002
Zagreb, Croatia, 10000
Actively Recruiting
21
Investigational Site Number : 2030001
Prague, Czechia, 128 08
Actively Recruiting
22
Investigational Site Number : 152200
Bonn, Germany, 53127
Actively Recruiting
23
Investigational Site Number : 380005
Florence, Firenze, Italy, 50139
Actively Recruiting
24
Investigational Site Number : 380007
Milan, Milano, Italy, 20133
Actively Recruiting
25
Investigational Site Number : 380011
Padua, Padova, Italy, 35128
Actively Recruiting
26
Investigational Site Number : 380015
Rome, Roma, Italy, 00165
Actively Recruiting
27
Investigational Site Number : 380008
Brescia, Italy, 25123
Actively Recruiting
28
Investigational Site Number : 380006
Cagliari, Italy, 09126
Actively Recruiting
29
Investigational Site Number : 380004
Genova, Italy, 16147
Actively Recruiting
30
Investigational Site Number : 380013
Messina, Italy, 98125
Actively Recruiting
31
Investigational Site Number : 380009
Monza, Italy
Actively Recruiting
32
Investigational Site Number : 380002
Padova, Italy, 35128
Actively Recruiting
33
Investigational Site Number : 380003
Pavia, Italy, 27100
Actively Recruiting
34
Investigational Site Number : 380012
Roma, Italy
Actively Recruiting
35
Investigational Site Number : 87147
Cardiff, Cardiff [Caerdydd Gb-crd], United Kingdom, CF14 4XW
Actively Recruiting
Research Team
T
Trial Transparency email recommended (Toll free number for US & Canada)
CONTACT
P
Pompe Registry HelpLine
CONTACT
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
4
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