Neurocognitive Outcomes
Standardized cognitive assessment tools for attention, social skills, social communication, and preschool measures in NF1 clinical trials.
Leadership
About This 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
The group is currently working on reviewing measures related to social skills, including social communication, social cognition, and social motivation.
Identifies neurocognitive outcome measures for children with NF under the age of 6 years, focusing on special issues related to rapid development in this age group and continuity of outcome tools for longitudinal research.
Subgroup leader: Bonnie Klein-Tasman, PhD
Additional Information
No additional sections yet.
Working Group Snapshot & Focus Updates
Currently working on reviewing measures related to social skills, including social communication, social cognition, and social motivation. The Preschool Subcommittee (led by Bonnie Klein-Tasman, PhD) focuses on neurocognitive outcome measures for children with NF under age 6.
Publications & References
Recommendations for Social Skills End Points for Clinical Trials in Neurofibromatosis Type 1
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.
Recommendations for Measurement of Attention Outcomes in Preschoolers With Neurofibromatosis
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. 1. Neurology 2021. Aug 2021; 97 (7 Supplement 1) S81-S90; DOI:10.1212/WNL.0000000000012423.
Neurocognitive outcomes in neurofibromatosis clinical trials
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.
Documents & Resources
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Membership is open to all interested parties. Meetings are primarily held by teleconference.
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