Quality of life of people with hemophilia
Not Applicable
- Conditions
- Health Condition 1: D66- Hereditary factor VIII deficiency
- Registration Number
- CTRI/2021/02/031192
- Lead Sponsor
- World Federation of Hemophilia
- Brief Summary
Not available
- Detailed Description
Not available
Recruitment & Eligibility
- Status
- ot Yet Recruiting
- Sex
- Not specified
- Target Recruitment
- 0
Inclusion Criteria
Patient diagnosed with hemophilia A, B &C based on confirmatory factor assay will be
included.
Exclusion Criteria
Patient will be not included if family member of the child or / care taker / patient do not
give consent to participate in registry
Suspected cases without confirmed diagnosis will also be excluded
Study & Design
- Study Type
- Observational
- Study Design
- Not specified
- Primary Outcome Measures
Name Time Method severity of hemophilia with the five domains that describe the <br/ ><br>QOL through quantitative data analysis. <br/ ><br>reasons and <br/ ><br>complexities of their disease in-depth and will be able to assess the living environment of <br/ ><br>the pwh in a holistic manner.Timepoint: quality of life parameters will be assessed using questionnaires and structured interviews with all the participants twice during the study. This will be done during first year and later after one year.
- Secondary Outcome Measures
Name Time Method Perceptions about the quality of life of PwHTimepoint: This data will be collected once during the study period. This activity will be done during the second year