None listed
Conditions
Interventions
None listed
Sponsors
Seth GS Medical College and KEM Hospital
Eligibility
Inclusion criteria
Inclusion criteria: Consenting parents of patients 1. With a confirmed diagnosis of Gaucher disease (enzyme activity ± molecular study) in childhood, 2. On treatment for Gaucher disease (Enzyme replacement therapy or Substrate Reduction Therapy) for at least one year or treatment naïve Gaucher disease.
Exclusion criteria
Exclusion criteria: 1. Parents with a chronic disease or those caring for another family member with a chronic disease 2. Parents with a background of psychiatric illness or addictions (e.g. alcoholism)
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| This study would help in identifying the parental stressors associated with the patients of GD and thus in turn will help to develop strategies to effectively manage them on time. Timepoint: Data collection- September 2021 to August 2022 Data Analysis- August 2022 to October 2022 Manuscript Writing- November to December 2022 | — |
Secondary
| Measure | Time frame |
|---|---|
| Study will help to develop strategies to effectively manage identified parental stressors on time. Timepoint: Data Analysis - 3 months Manuscript Writing -1 Month | — |
Countries
India
Contacts
Public ContactDr Saurabh Gade
Seth G.S. Medical College and KEM Hospital
Outcome results
None listed