View Clinical Trial (Medical Research Study)
International Collaborative Gaucher Group (ICGG) Gaucher Registry
| City: |
|
Cambridge |
| State: |
|
Massachusetts |
| Zip Code: |
|
02142 |
| Conditions: |
|
Gaucher Disease - Cerebroside Lipidosis Syndrome - Glucocerebrosidase Deficiency Disease - Glucosylceramide Beta-Glucosidase Deficiency Disease |
| Purpose: |
|
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.
|
| Study Summary: |
|
The ICGG Gaucher Registry is an international program; in addition to the central contact
information provided under the "Location" heading, patients may contact:
- In Asia-Pacific - Vivian Liu, +65-6431-2548, Vivian.liu@genzyme.com
- In Europe - +31-35-699-1232, europe@gaucherregistry.com
- In Latin America - +617-591-5500, help@gaucherregistry.com
- In North America - +617-591-5500, help@gaucherregistry.com
|
| Criteria: |
|
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.
|
| NCT ID: |
|
NCT00358943 |
| Primary Contact: |
|
Study Director
Medical Monitor
Genzyme
ICGG Gaucher Registry HelpLine
Phone: 800-745-4447 ext. x15500
Email: help@gaucherregistry.com
|
| Backup Contact: |
|
Email: help@gaucherregistry.com
ICGG Gaucher Registry HelpLine
Phone: 617-591-5500
|
| Location Contact: |
|
Cambridge, Massachusetts 02142
United States
There is no listed contact information for this specific location.
Site Status: Recruiting |
| Data Source: |
|
ClinicalTrials.gov |
| Date Processed: |
|
June 18, 2013 |
| Modifications to this listing: |
|
Only selected fields are shown, please use the link
below to view all information about this clinical trial. |
|
Click to view Full Listing
|