Development of a Child Neurofibromatosis Type 1 Health Related Quality of Life Measure
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- STATUS
- Not Recruiting
Summary
The purpose of this study is to conduct semi-structured interviews with 50 subjects to determine how NF1 affects health related quality of life and well-being; to develop a survey from literature review, expert interviews and the semi-structured interview; to pilot test the survey (with adaptations from the cognitive interviews) with 40 subjects; and to field test the NF1-specific QOL measure with upto 720 subjects. Perform statistical analysis to validate the final instrument.
Description
The purpose of this study is to conduct semi-structured interviews with 50 subjects to determine how NF1 affects health related quality of life and well-being; to develop a survey from literature review, expert interviews and the semi-structured interview; to pilot test the survey (with adaptations from the cognitive interviews) with 40 subjects; and to field test the NF1-specific QOL measure with upto 720 subjects. Perform statistical analysis to validate the final instrument.
Details
| Condition | neurofibromatosis type 1 |
|---|---|
| Age | 100years or below |
| Clinical Study Identifier | TX6914 |
| Last Modified on | 19 February 2024 |
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