Registry tracking outcomes for patients with Gaucher disease

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

The ICGG Gaucher Registry is an international observational program that monitors clinical outcomes for patients diagnosed with Gaucher disease, regardless of their treatment status. This registry collects data on the variability, progression, and natural history of the disease to improve understanding and guide therapeutic interventions. It also aims to assist the medical community in developing monitoring recommendations and optimizing patient care. Additionally, a sub-registry focuses on tracking outcomes for pregnant patients with Gaucher disease.

Why it matters

Who can join: the full rules

Inclusion Criteria:

ICGG Gaucher Registry

* All patients with a confirmed diagnosis of Gaucher disease are eligible for inclusion in the Registry. Confirmed diagnosis is defined as a documented β-glucocerebrosidase deficiency and/or mutation in the β-glucocerebrosidase gene.
* For all patients, appropriate patient authorization will be obtained.

Gaucher Pregnancy Sub-registry:

* be enrolled in the ICGG Gaucher Registry.
* 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.

Exclusion Criteria:

\- No exclusion criteria for participation in the ICGG Gaucher Registry and Sub-registry.

Where it's running

• Phoenix Children's Hospital- Site Number : 840003
  Phoenix, Arizona, United States Recruiting
• University of Arizona- Site Number : 840015
  Tucson, Arizona, United States Recruiting
• Arkansas Children's Hospital- Site Number : 840109
  Little Rock, Arkansas, United States Recruiting
• University of Arkansas for Medical Sciences- Site Number : 840113
  Little Rock, Arkansas, United States Recruiting
• Tower Hematology Oncology Medical Group- Site Number : 840056
  Beverly Hills, California, United States Recruiting
• Southern California Permanente Medical Group- Site Number : 840108
  Los Angeles, California, United States Recruiting

+267 more sites. See ClinicalTrials.gov for the full list.

Study contacts

• Study coordinator: Trial Transparency email recommended (Toll free number for US & Canada)
• Email: contact-us@sanofi.com
• Phone: 800-633-1610

Similar studies

Other studies for the same condition or treatment. Recruiting studies are listed first.

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How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.