The development of the PlexiQoL: A patient‐reported outcome measure for adults with neurofibromatosis type 1‐associated plexiform neurofibromas

ABSTRACT Background To develop and validate a patient‐reported outcome (PRO) measure of quality of life (QoL), specific to patients with Neurofibromatosis Type 1 (NF1)‐associated plexiform neurofibromas (pNFs), suitable for use in clinical efficacy trials. The study was conducted in parallel in the...

Full description

Bibliographic Details
Main Authors: Alice Heaney, Jeanette Wilburn, Matthew Rouse, Shannon Langmead, Jaishri O. Blakeley, Susan Huson, Stephen P. McKenna
Format: Article
Language:English
Published: Wiley 2020-12-01
Series:Molecular Genetics & Genomic Medicine
Subjects:
Online Access:https://doi.org/10.1002/mgg3.1530