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Producing a preference-based quality of life measure for people with Duchenne muscular dystrophy: a mixed-methods study protocol.

Philip A PowellJill CarltonDonna RowenJohn E Brazier
Published in: BMJ open (2019)
This study has received ethical approval from the National Health Service (REC reference: 18/SW/0055). The primary output of this research will be a condition-specific PBM (or 'bolt-on' to an existing generic PBM) in people with DMD and an associated value set. Results will be disseminated through international conferences and open-access journals.
Keyphrases
  • duchenne muscular dystrophy
  • muscular dystrophy
  • randomized controlled trial
  • minimally invasive
  • quality improvement
  • systematic review
  • decision making
  • meta analyses