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International Collaborative Gaucher Group (ICGG) Gaucher Disease Registry & Pregnancy Sub-registry

    • Sanofi Genzyme

    Project: Clinical Trial

    Project Details

    Description

    The ICGG Gaucher Registry is an ongoing, international multi-center, strictly observational program that tracks the routine clinical outcomes for patients with Gaucher disease, irrespective of treatment status. No experimental intervention is involved; patients in the Registry undergo clinical assessments and receive care as determined by the patient's treating physician.

    The objectives of the Registry are:

    * To enhance understanding of the variability, progression, identification, and natural history of Gaucher disease, with the ultimate goal of better guiding and assessing therapeutic intervention.
    * To assist the Gaucher medical community with the development of recommendations for monitoring patients, and to provide reports on patient outcomes, to optimize patient care.
    * To characterize the Gaucher disease population.
    * To evaluate the long-term effectiveness of imiglucerase and of eliglustat.

    Gaucher Pregnancy Sub-registry: The primary objective of this Sub-registry is to track pregnancy outcomes, including complications and infant growth, in all women with Gaucher disease during pregnancy, regardless of whether they receive disease-specific therapy. 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. If a patient consents to this Sub-registry, information about the patient's medical and obstetric history, pregnancy, and birth will be collected, and, if a patient consents to data collection for her infant, data on infant growth through month 36 postpartum will be collected.
    StatusActive
    Effective start/end date1/04/9131/01/34

    Collaborative partners

    Keywords

    • Sphingolipidoses
    • Nervous System Lysosomal Storage Diseases
    • Metabolic Brain Diseases
    • Inborn Metabolic Brain Diseases
    • Brain Diseases
    • Central Nervous System Diseases
    • Nervous System Diseases
    • Metabolism, Inborn Errors
    • Inborn Genetic Diseases
    • Lipid Metabolism, Inborn Errors
    • Lysosomal Storage Diseases
    • Metabolic Diseases
    • Lipid Metabolism Disorders
    • Malnutrition
    • Nutrition Disorders
    • Gaucher Disease
    • Lipidoses
    • Deficiency Diseases
    • Glucocerebrosidase Deficiency Disease

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