A Long-term Follow-up Study of Gaucher Disease

Purpose

The study aims are to: a) identify the long-term natural history of Gaucher disease, b) evaluate long-term treatment efficacy of enzyme replacement therapy (ERT) and substrate reduction therapy (SRT), and c) identify potential long-term complications of this disorder. These aims will be accomplished through long-term record review of individuals with all three types of Gaucher disease.

Condition

  • Gaucher Disease

Eligibility

Eligible Ages
All ages
Eligible Sex
All
Accepts Healthy Volunteers
No

Inclusion Criteria

  • Diagnosis of Gaucher Disease

Exclusion Criteria

  • Not meeting Inclusion criteria

Study Design

Phase
Study Type
Observational
Observational Model
Other
Time Perspective
Prospective

Recruiting Locations

Duke University Medical Center
Durham, North Carolina 27710

More Details

Status
Recruiting
Sponsor
Duke University

Study Contact

Janet Blount
919-681-7962
janet.blount@duke.edu

Detailed Description

The study aims (aims a-c) will be accomplished by the systematic monitoring of health records. Health information will be extracted from medical records for patients followed at Duke. Medical records will be requested from treating physicians outside of Duke. The PI, (Dr. Kishnani) a recognized expert in Gaucher disease, is a consultant to the treating physician of virtually all subjects in this study. Subject health status will be monitored at least on an annual basis and as regularly as the medical information is obtained from the treating physician. Enrollment in this study will not alter the standard of care treatment for patients with Gaucher disease.