Current Recommendations for Patient-Reported Outcome Measures Assessing Domains of Quality of Life in Neurofibromatosis Clinical Trials.
Pamela L WoltersAna-Maria VranceanuHeather L ThompsonStaci MartinVanessa L MerkerAndrea BaldwinCarolina Barnett-TapiaKimberley S KoetsierCynthia M HingtgenChristopher J FunesJames H TonsgardElizabeth K SchorryTaryn AllenTaylor SmithBarbara FranklinStephanie Reevenull nullPublished in: Neurology (2021)
The REiNS Collaboration currently recommends these generic and disease-specific PRO measures to assess multidimensional domains of QoL for NF clinical trials. Additional research is needed to further evaluate the use of these measures in both medical and psychosocial trials.