Enhancing Neurofibromatosis Clinical Trial Outcome Measures Through Patient Engagement: Lessons From REiNS.

Vanessa L Merker Andrés J LessingIrene MossMaureen HusseyBeverly OberlanderTraceann RoseRaquel ThalheimerTracy WirtanenPamela L WoltersAndrea M GrossScott R Plotkinnull null

Published in: Neurology (2021)

Involving patient representatives in REiNS improved perceived quality of neurofibromatosis clinical trial outcome measures. Negotiating sufficient opportunities to engage, fostering an inclusive atmosphere, and navigating time pressures are key to effective patient engagement.

Keyphrases

clinical trial
case report
depressive symptoms
open label
randomized controlled trial
physical activity
mental health
study protocol
phase ii