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Survey of the Gaucher Disease Outcome to use the data collected to better understand the course of the disease, how it is treated and possibly improve how patients are cared for.

Gaucher Disease Outcome Survey (GOS) - GOS

Status
Active, not recruiting
Phases
Unknown
Study type
Observational
Source
CTRI
Registry ID
CTRI/2013/12/004218
Enrollment
500
Registered
2013-12-16
Start date
Unknown
Completion date
Unknown
Last updated
2021-11-24

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Health Condition 1: null- Gaucher disease

Interventions

Sponsors

Shire Human Genetic Therapies Inc
Lead Sponsor
inVentiv International Pharma Services Pvt Ltd
Collaborator

Eligibility

Inclusion criteria

Inclusion criteria: 1. Patients of any age or gender with confirmed diagnosis (biochemical and/or genetic) of Gaucher disease. 2. Written informed consent obtained from the patient, and/or patientâ??s parent(s), and/or legal representative. Assent, if old enough to grant, will be obtained from all patients under the age of 18 years

Exclusion criteria

Exclusion criteria: 1. Patients currently enrolled in ongoing blinded or open-label clinical trials (drugs or devices) (includes all blinded trials).

Design outcomes

Primary

MeasureTime frame
� To characterize the clinical course of the patient population with Gaucher disease of any type. � To characterize the population of patients affected with Gaucher disease who are receiving treatment. � To monitor the safety and effectiveness of VPRIV® (velaglucerase alfa) enzyme replacement therapy. � To collect data on the long-term safety and effectiveness of VPRIV treatment in patients with Gaucher disease who are new to therapy or who have been switched from another agent.Timepoint: None

Secondary

MeasureTime frame
- To enhance the understanding of the response of VPRIV in patients with Gaucher disease. - To collect data on the impact of treatment on the health-related quality of life for patients with Gaucher disease. - To provide a platform for the collection of data on the clinical experience with VPRIV and to serve as a database for evidence-based management of Gaucher disease. -To collect ongoing information on safety and effectiveness in support of regulatory and pharmacovigilance obligations Timepoint: None

Countries

India

Contacts

Public ContactDr Sumit Goyal

inVentiv Health Clinical

sumit.goyal@inventivhealth.com915652540162

Outcome results

None listed

Source: CTRI (via WHO ICTRP) · Data processed: Feb 4, 2026