title: Assessment of Day-to-Day Functioning 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 in day-to-day activities in prHD and early HD individuals.
authors.affiliation: Research Methods, Ontario Cancer Biomarker Network, Toronto, Ontario, Canada; Department of Psychiatry and Department of Neurology, University of Maryland, School of Medicine, Baltimore, MD USA; Department of Psychiatry, Columbia University College of Physicians and Surgeons, New York, New York; CHDI Foundation, Inc.; Division of Neurology, Department of Medicine, University of Toronto, Toronto, Ontario Canada; School of Psychology and Clinical Language Sciences, University of Reading, U.K.; Department of Psychiatry, The University of Iowa Carver College of Medicine, Iowa City, IA, USA; Department of Biostatistics, CHDI Foundation, Princeton NJ USA and College of Nursing, The University of Iowa, Iowa City, IA.
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: Jean
authors.initials: J
authors.lastname: Endicott
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: Peter
authors.initials: P
authors.lastname: Kupchak
authors.forename: Jane S
authors.initials: JS
authors.lastname: Paulsen
authors.forename: John H
authors.initials: JH
authors.lastname: Warner
authors.forename: Janet
authors.initials: J
authors.lastname: Williams
authors.forename: Ken
authors.initials: K
authors.lastname: Evans