This study is currently not recruiting participants.

Development of a Child Neurofibromatosis Type 1 Health Related Quality of Life Measure

Not Recruiting
100 years or below
All
Phase N/A

Brief description of study.

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.

Detailed description of study

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.

Eligibility of study

You may be eligible for this study if you meet the following criteria:

  • Conditions: neurofibromatosis type 1
  • Age: 100 years or below
  • Gender: All
Updated on 19 Sep 2016. Study ID: 1403632840

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