Functional Outcomes Group 

The goal of functional outcomes working group is to identify standardized functional measures appropriate for use as endpoints in NF clinical trials.  Our group reviews measures for types of physical functioning that can be affected by NF, including hearing, facial function, pulmonary function (breathing), walking and sleep. 

Current group leader: Andrea Gross, MD

Past group leader: Scott Plotkin, MD, PhD

Current Work

Currently, we are working on the designing a trial to establish the reliability of hand-held dynamometry (HHD) for measurement of strength in individuals with NF.   We also researching the possibility of designing a trial to establish the validity of measuring swallowing function.

Publications

1. Plotkin SR, Ardern-Holmes SL, Barker FG, et al. Hearing and facial function outcomes for neurofibromatosis 2 clinical trials. Neurology 2013 Nov 19;81:(21 Suppl 1)S25-S32. [PDF]

2. Plotkin SR, Davis SD, Robertson KA, et al. Sleep and pulmonary outcomes for clinical trials of airway plexiform neurofibromas in NF1. Neurology 2016 Aug 16;87(7 Suppl 1):S13-20. [PDF]

3. Srivandana Akshintala, Nashwa Khalil, Kaleb Yohay, Alona Muzikansky, Jeffrey Allen, Anna Yaffe, Andrea M. Gross, Michael J. Fisher, Jaishri O. Blakeley, Beverly Oberlander, Miriam Pudel, Celia Engelson, Jaime Obletz, Carole Mitchell, Brigitte C.Widemann, David A. Stevenson, Scott R. Plotkin. Reliability of Handheld Dynamometry to Measure Focal Muscle Weakness in Neurofibromatosis Types 1 and 2. Neurology 2021. Aug 2021; 97 (7 Supplement 1) S99-S110; DOI:10.1212/WNL.0000000000012439. [PDF]

Presentations

CTF Functional Outcomes Poster AG BW 6-13-16.pptx

Resources