The development of the PlexiQoL: A patient-reported outcome measure for adults with neurofibromatosis type 1-associated plexiform neurofibromas.
Alice HeaneyJeanette WilburnMatthew A RouseShannon LangmeadJaishri O BlakelySusan HusonStephen P McKennaPublished in: Molecular genetics & genomic medicine (2020)
The PlexiQoL is the first disease-specific PRO assessing the ability of adults with NF-1 associated pNFs to meet their basic human needs. Clinical trials are planned to assess the sensitivity to change of the PlexiQoL in people undergoing treatment for pNFs.