Listening to children’s and parents’ voices: using patient reported outcomes to empower patients with orphan diseases and their parents
نویسنده
چکیده
Background Systematic evaluation of outcomes is essential for clinical trial research, yet outcomes often neglect the voice of the child and parent, particularly within paediatric orphan diseases. While guidance for the development and validation of Patient Reported Outcomes (PROs) and Observer Reported Outcomes (ObsRO) measures are available from EMA and FDA , little attention has focused on paediatric and orphan disease PRO/ObsRO development methods [1,2].
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