International Collaborative Gaucher Group (ICGG) Gaucher Registry
| Status: | Recruiting |
|---|---|
| Conditions: | Neurology, Endocrine, Metabolic |
| Therapuetic Areas: | Endocrinology, Neurology, Pharmacology / Toxicology |
| Healthy: | No |
| Age Range: | Any |
| Updated: | 3/15/2019 |
| Start Date: | April 1991 |
| End Date: | January 31, 2030 |
| Contact: | For site information, send an email with site number to |
| Email: | Contact-Us@sanofi.com |
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 the understanding of the variability, progression, and natural history of
Gaucher disease with the ultimate goal of better guiding and assessing therapeutic
interventions;
- To provide the Gaucher medical community with recommendations for monitoring patients
and to provide reports on patient outcomes to help optimize patient care; and
- To evaluate the long-term effectiveness of Cerezyme.
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 the understanding of the variability, progression, and natural history of
Gaucher disease with the ultimate goal of better guiding and assessing therapeutic
interventions;
- To provide the Gaucher medical community with recommendations for monitoring patients
and to provide reports on patient outcomes to help optimize patient care; and
- To evaluate the long-term effectiveness of Cerezyme.
Inclusion Criteria:
- 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.
Exclusion Criteria:
- No exclusion criteria for participation in the ICGG Gaucher Registry.NOTE: Registry
participation does not exclude participation in other clinical studies.
We found this trial at
9
sites
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