title: Assessment of motor symptoms and functional impact in prodromal and early huntington disease.
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 functional impact of motor manifestations in prHD and early HD individuals.
authors.affiliation: Research Methods, Ontario Cancer Biomarker Network, Toronto, Ontario, Canada.
authors.forename: Anthony L
authors.initials: AL
authors.lastname: Vaccarino
authors.forename: Terrence
authors.initials: T
authors.lastname: Sills
authors.forename: Karen E
authors.initials: KE
authors.lastname: Anderson
authors.forename: Kevin
authors.initials: K
authors.lastname: Biglan
authors.forename: Beth
authors.initials: B
authors.lastname: Borowsky
authors.forename: Joseph
authors.initials: J
authors.lastname: Giuliano
authors.forename: Mark
authors.initials: M
authors.lastname: Guttman
authors.forename: Aileen K
authors.initials: AK
authors.lastname: Ho
authors.forename: Christopher
authors.initials: C
authors.lastname: Kennard
authors.forename: Peter
authors.initials: P
authors.lastname: Kupchak
authors.forename: G Bernhard
authors.initials: GB
authors.lastname: Landwehrmeyer
authors.forename: Andrew
authors.initials: A
authors.lastname: Michell
authors.forename: Jane S
authors.initials: JS
authors.lastname: Paulsen
authors.forename: Ralf
authors.initials: R
authors.lastname: Reilmann
authors.forename: Daniel P
authors.initials: DP
authors.lastname: van Kammen
authors.forename: John H
authors.initials: JH
authors.lastname: Warner
authors.forename: Ken
authors.initials: K
authors.lastname: Evans