Neurocognitive Outcomes Group

The goal of the neurocognitive outcomes working group is to identify standardized and specific cognitive assessment tools for use as endpoints in NF clinical trials.  Our group critically reviews existing standardized cognitive assessment tools and provides recommendations for a core test bank of neurocognitive measures across cognitive domains to be utilized in NF1 clinical trials.  We assess both performance based tests and behavioral rating scales.  Our group also functions as a resource for researchers in the development of cognitive protocols. 

Current group leader: Jennifer Janusz, PsyD

Past group leader:  Karin Walsh, PsyD

Click Here for a Working Group Snapshot

Current Work

The group is currently working on reviewing measures related to social skills, including social communication, social cognition, and social motivation.

Preschool Subcommittee

The goals of this subcommittee are to identify neurocognitive outcome measures for children with NF under the age of 6 years, focusing on special issues related to the rapid development in this age group, as well as the continuity of outcome tools for longitudinal research on cognition.

Current subgroup leader: Bonnie Tasman-Klein, PhD

Publications

1. Walsh KS, Janusz J, Wolters PL, et al. Neurocognitive outcomes in neurofibromatosis clinical trials: Recommendations for the domain of attention. Neurology 2016 Aug 16;87(7 Suppl 1): S21-30. [PDF]

2. Jennifer A. Janusz, Bonita P. Klein-Tasman, Jonathan M. Payne, Pamela L. Wolters, Heather L. Thompson, Staci Martin, Peter de Blank, Nicole Ullrich, Allison del Castillo, Maureen Hussey, Kristina K. Hardy, Kristina Haebich, TenaRosser, Mary Anne Toledo-Tamula, Karin S. Walsh. Recommendations for Social Skills End Points in for Clinical Trials in Neurofibromatosis Type 1. Neurology 2021. Aug 2021; 97 (7 Supplement 1) S73-S80; DOI:10.1212/WNL.0000000000012422. [PDF]

3. Bonita P. Klein-Tasman, Kristin Lee, Heather L. Thompson, Jennifer Janusz, Jonathan M. Payne, Sara Pardej, Peterde Blank, Tess Kennedy, Kelly M. Janke, Allison del Castillo, Karin S. Walsh. Recommendations for Measurement of Attention Outcomes in Preschoolers With Neurofibromatosis.
Neurology 2021. Aug 2021; 97 (7 Supplement 1) S81-S90; DOI:10.1212/WNL.0000000000012423. [PDF]

Presentations

Neurocognitive Outcomes Conference Poster.pptx

Resources