前驱期和早期亨廷顿病认知症状的评估

Assessment of cognitive symptoms in prodromal and early huntington disease.

作者信息

Vaccarino Anthony L, Sills Terrence, Anderson Karen E, Borowsky Beth, Craufurd David, Giuliano Joseph, Goodman Lavonne, Guttman Mark, Kupchak Peter, Ho Aileen K, Paulsen Jane S, C Stout Julie, van Kammen Daniel P, Evans Ken

机构信息

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; 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; CHDI Foundation, Inc.; Huntington's Disease Drug Works, Lake Forest Park, WA; 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; School of Psychology and Psychiatry, Monash University, Melbourne, Australia and CNS Drug Development consultant.

出版信息

PLoS Curr. 2011 Oct 25;3:RRN1250. doi: 10.1371/currents.RRN1250.

DOI:10.1371/currents.RRN1250

PMID:22120841

原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC3201666/

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 cognitive symptoms in prHD and early HD individuals.

摘要

亨廷顿病前驱期功能评定量表工作组（FuRST-pHD）是一项跨国、多学科倡议，其目标是开发一种基于数据驱动、全面、心理测量学上合理的评定量表，用于评估前驱期和早期亨廷顿病（HD）基因扩展携带者的症状和功能能力。该过程涉及众多来源的投入，以确定相关症状领域，包括HD患者、护理人员以及来自各个领域的专家，还有从使用现有临床量表对HD进行的正在进行的大规模研究数据分析中获得的知识。这是一个迭代过程，其中在前驱期（prHD）和早期HD个体中进行的一系列持续的现场测试为团队提供数据，以便就哪些问题应进一步开发或测试以及哪些应排除做出决策。我们在此报告旨在评估prHD和早期HD个体认知症状的第一轮访谈问题的开发和评估情况。