title: Development of the Comprehensive Cervical Dystonia Rating Scale: Methodology.
abstract: We present the methodology utilized for development and clinimetric testing of the Comprehensive Cervical Dystonia (CD) Rating scale, or CCDRS. The CCDRS includes a revision of the Toronto Western Spasmodic Torticollis Rating Scale (TWSTRS-2), a newly developed psychiatric screening tool (TWSTRS-PSYCH), and the previously validated Cervical Dystonia Impact Profile (CDIP-58). For the revision of the TWSTRS, the original TWSTRS was examined by a committee of dystonia experts at a dystonia rating scales workshop organized by the Dystonia Medical Research Foundation. During this workshop, deficiencies in the standard TWSTRS were identified and recommendations for revision of the severity and pain subscales were incorporated into the TWSTRS-2. Given that no scale currently evaluates the psychiatric features of cervical dystonia (CD), we used a modified Delphi methodology and a reiterative process of item selection to develop the TWSTRS-PSYCH. We also included the CDIP-58 to capture the impact of CD on quality of life. The three scales (TWSTRS2, TWSTRS-PSYCH, and CDIP-58) were combined to construct the CCDRS. Clinimetric testing of reliability and validity of the CCDRS are described. The CCDRS was designed to be used in a modular fashion that can measure the full spectrum of CD. This scale will provide rigorous assessment for studies of natural history as well as novel symptom-based or disease-modifying therapies.
authors.affiliation: Rush Medical School, Chicago, Illinois, USA.
authors.forename: Cynthia L
authors.initials: CL
authors.lastname: Comella
authors.affiliation: Toronto Western Hospital, University of Toronto, Toronto, Ontario, Canada.
authors.forename: Susan H
authors.initials: SH
authors.lastname: Fox
authors.affiliation: University College London, London, United Kingdom.
authors.forename: Kailash P
authors.initials: KP
authors.lastname: Bhatia
authors.affiliation: Washington University School of Medicine, St. Louis, Missouri, USA.
authors.forename: Joel S
authors.initials: JS
authors.lastname: Perlmutter
authors.affiliation: Emory University, Atlanta, Georgia, USA.
authors.forename: Hyder A
authors.initials: HA
authors.lastname: Jinnah
authors.affiliation: Toronto Western Hospital, University of Toronto, Toronto, Ontario, Canada.
authors.forename: Mateusz
authors.initials: M
authors.lastname: Zurowski
authors.affiliation: Emory University, Atlanta, Georgia, USA.
authors.forename: William M
authors.initials: WM
authors.lastname: McDonald
authors.affiliation: Baylor College of Medicine, Houston and Michael E. DeBakey Veterans Affairs Medical Center, Houston, Texas, USA.
authors.forename: Laura
authors.initials: L
authors.lastname: Marsh
authors.affiliation: Emory University, Atlanta, Georgia, USA.
authors.forename: Ami R
authors.initials: AR
authors.lastname: Rosen
authors.affiliation: Rush Medical School, Chicago, Illinois, USA.
authors.forename: Tracy
authors.initials: T
authors.lastname: Waliczek
authors.affiliation: Washington University School of Medicine, St. Louis, Missouri, USA.
authors.forename: Laura J
authors.initials: LJ
authors.lastname: Wright
authors.affiliation: National Institute of Neurological Disorders and Stroke, National Institutes of Health, Bethesda, Maryland, USA.
authors.forename: Wendy R
authors.initials: WR
authors.lastname: Galpern
authors.affiliation: Rush Medical School, Chicago, Illinois, USA.
authors.forename: Glenn T
authors.initials: GT
authors.lastname: Stebbins
keywords: CDIP-58; TWSTRS; cervical dystonia; focal dystonia; rating scale