RecruitingNCT00567073

Pompe Pregnancy Sub-Registry

A Sub-registry to Observe the Effect of Alglucosidase Alfa or Avalglucosidase Alfa Treatment on Pregnancy and Infant Growth in Women With Pompe Disease


Sponsor

Genzyme, a Sanofi Company

Enrollment

20 participants

Start Date

Jun 18, 2007

Study Type

OBSERVATIONAL

Conditions

Summary

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.


Eligibility

Sex: FEMALE

Inclusion Criteria5

  • Eligible women must:
  • be enrolled in the Pompe registry (NCT00231400)
  • be pregnant, or have been pregnant with appropriate medical documentation available.
  • provide a signed informed consent and authorization form(s) to participate in the Sub-Registry prior to any Sub-Registry-related data collection being performed.
  • Note: It is recommended that pregnancy data be collected on eligible women regardless of infant enrollment. In the event of patients having multiple pregnancies, participation in this Sub-Registry is encouraged for each individual pregnancy.

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Locations(26)

Investigational Site Number : 380015

Roma, Italy

Investigational Site Number : 380012

Roma, Italy

Barrow Neurol Group- Site Number : 840087

Phoenix, Arizona, United States

Emory University School Of Medicine- Site Number : 840060

Atlanta, Georgia, United States

Indianapolis University School of Medicine- Site Number : 840027

Indianapolis, Indiana, United States

Spectrum for Health- Site Number : 840019

Grand Rapids, Michigan, United States

New York University School Of Medicine- Site Number : 840040

New York, New York, United States

Mt. Sinai School of Medicine- Site Number : 840005

New York, New York, United States

Duke University Medical Center Genetics Dept- Site Number : 840037

Durham, North Carolina, United States

LSD Data Registry Site LLC- Site Number : 840094

Dublin, Ohio, United States

Oregon Health and Science University- Site Number : 840095

Portland, Oregon, United States

O&O Alpan, LLC- Site Number : 840025

Fairfax, Virginia, United States

Investigational Site Number : 056001

Ghent, Belgium

Investigational Site Number : 1910001

Zagreb, Croatia

Investigational Site Number : 1910002

Zagreb, Croatia

Investigational Site Number : 2030001

Prague, Czechia

Investigational Site Number : 380008

Brescia, Italy

Investigational Site Number : 380006

Cagliari, Italy

Investigational Site Number : 380005

Florence, Italy

Investigational Site Number : 380004

Genova, Italy

Investigational Site Number : 380013

Messina, Italy

Investigational Site Number : 380007

Milan, Italy

Investigational Site Number : 380009

Monza, Italy

Investigational Site Number : 380002

Padova, Italy

Investigational Site Number : 380011

Padua, Italy

Investigational Site Number : 380003

Pavia, Italy

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