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

Join our Gaucher Disease study, including pregnancy tracking!

Recruiting
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Phase N/A

Gaucher Disease is a medical condition where fat builds up in certain organs. This study is about collecting information on people with this disease. There's no new treatment involved, just regular doctor visits to see how the disease affects them. The main goal is to learn more about how Gaucher disease changes over time, to help doctors make better treatment plans.

The study also has a special section for pregnant women with Gaucher disease. Here, the focus is on understanding pregnancy and baby outcomes with this condition. Participants will have their health checked by their own doctors, and no new treatments will be tested. Information will be gathered about the pregnancy and baby growth up to three years old.

To join, you just need a doctor's confirmation that you have Gaucher disease. Pregnant women need to sign a form saying they agree to share their medical information. There are no reasons that would exclude someone from joining.

  • The study is ongoing with no set end date.
  • No new treatments are given; only regular doctor visits are needed.
  • This study is purely observational, meaning it just collects data without changing treatment.
Study details
    Gaucher Disease
    Cerebroside Lipidosis Syndrome
    Glucocerebrosidase Deficiency Disease
    Glucosylceramide Beta-Glucosidase Deficiency Disease

NCT00358943

Genzyme, a Sanofi Company

13 December 2024

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What is a clinical trial?

A clinical trial is a study designed to test specific interventions or treatments' effectiveness and safety, paving the way for new, innovative healthcare solutions.

Why should I take part in a clinical trial?

Participating in a clinical trial provides early access to potentially effective treatments and directly contributes to the healthcare advancements that benefit us all.

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The duration of clinical trials varies. Some trials last weeks, some years, depending on the phase and intention of the trial.

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Compensation varies per trial. Some offer payment or reimbursement for time and travel, while others may not.

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Clinical trials follow strict ethical guidelines and protocols to safeguard participants' health. They are closely monitored and safety reviewed regularly.
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