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.
Glycogen Storage Disease Type II (GSD-II), Pompe Disease (Late-onset), Glycogenesis 2 Acid Maltase Deficiency
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.
Pompe Pregnancy Sub-Registry
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Barrow Neurol Group- Site Number : 840087, Phoenix, Arizona, United States, 85013
Emory University School Of Medicine- Site Number : 840060, Atlanta, Georgia, United States, 30322
Indianapolis University School of Medicine- Site Number : 840027, Indianapolis, Indiana, United States, 46202
Spectrum for Health- Site Number : 840019, Grand Rapids, Michigan, United States, 49503
New York University School Of Medicine- Site Number : 840040, New York, New York, United States, 10016
Mt. Sinai School of Medicine- Site Number : 840005, New York, New York, United States, 10029
Duke University Medical Center Genetics Dept- Site Number : 840037, Durham, North Carolina, United States, 27710
LSD Data Registry Site LLC- Site Number : 840094, Dublin, Ohio, United States, 43017
Oregon Health and Science University- Site Number : 840095, Portland, Oregon, United States, 97239
O&O Alpan, LLC- Site Number : 840025, Fairfax, Virginia, United States, 22030
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FEMALE
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Genzyme, a Sanofi Company,
Study Director, STUDY_DIRECTOR, Genzyme, a Sanofi Company
2034-01-31