title: Assessment of depression, anxiety and apathy 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 Depression, Anxiety and Apathy in prHD and early HD individuals.
authors: 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; AP-HP, centre de référence maladie de Huntington; INSERM U955 E01- Ecole Normale Supérieure-University Paris Est, Neuropsychologie interventionnelle laboratory,Créteil- Paris, France; Translational Medicine, CHDI Foundation, Inc., Princeton NJ; University of Manchester, Manchester Academic Health Sciences Centre and Central Manchester University Hospitals NHS Foundation Trust, Manchester, UK; Neurology, University of Utah, Salt Lake City UT USA; CHDI Foundation, Inc.; Departments of Neurology and Psychiatry, Beth Israel Medical Center, New York, NY; 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; The Norwegian Centre for Movement Disorders, Stavanger University Hospital, Stavanger, Norway & Department of Neurology, Stavanger University Hospital, Stavanger, Norway; Department of Psychiatry, Leiden University Medical Centre, Leiden, Netherlands and CNS Drug Development consultant.
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