Citation

Vaccarino AL, Anonymous, Anderson KE, Borowsky B, Coccaro E, Craufurd D, Endicott J, Giuliano J, Groves M, Guttman M, Ho AK, Kupchak P, Paulsen JS, Stanford MS, van Kammen DP, Watson D, Wu KD, Evans K. PLoS Curr. 2011; 3: RRN1241.

Affiliation

Research Methods, Ontario Cancer Biomarker Network, Toronto, Ontario, Canada

Copyright

(Copyright © 2011, Public Library of Science)

DOI

10.1371/currents.RRN1241

PMID

21826116

PMCID

PMC3122583

Abstract

The Functional Rating Scale Taskforce for pre-Huntington Disease (FuRST-pHD) is a multinational, multidisciplinary initiative with the goal of developing a data-driven, comprehensive, psychometrically sound, rating scale for assessing symptoms and functional ability in prodromal and early Huntington disease (HD) gene expansion carriers. The process involves input from numerous sources to identify relevant symptom domains, including HD individuals, caregivers, and experts from a variety of fields, as well as knowledge gained from the analysis of data from ongoing large-scale studies in HD using existing clinical scales. This is an iterative process in which an ongoing series of field tests in prodromal (prHD) and early HD individuals provides the team with data on which to make decisions regarding which questions should undergo further development or testing and which should be excluded. We report here the development and assessment of the first iteration of interview questions aimed to assess "Anger and Irritability" and "Obsessions and Compulsions" in prHD individuals.

Language: en