Recommendations for assessing appearance concerns related to plexiform and cutaneous neurofibromas in neurofibromatosis 1 clinical trials

CONCLUSION: The Response Evaluation in Neurofibromatosis and Schwannomatosis patient-reported outcome working group currently recommends the FACE-Q Craniofacial Module Appearance Distress scale to evaluate patient-reported changes in appearance concerns in clinical trials for neurofibromatosis 1-related plexiform or cutaneous neurofibromas. Additional research is needed to validate this measure in people with neurofibromatosis 1, including older adults and those with tumors in various body locations, and explore the effects of nontumor manifestations on appearance concerns in people with neurofibromatosis 1 and schwannomatosis.PMID:38140900 | DOI:10.1177/17407745231205577

Source: Clinical Trials - December 23, 2023 Category: Research Authors: Vanessa L Merker Heather L Thompson Pamela L Wolters Frank D Buono Cynthia M Hingtgen Tena Rosser Belinda Barton Carolina Barnett Taylor Smith Diana Haberkamp Miranda L McManus Andrea Baldwin Irene P Moss Claas R öhl Staci Martin Source Type: research