MDS-Sponsored Scale Translation Program: Process, Format, and Clinimetric Testing Plan for the MDS-UPDRS and UDysRS (P2.052)

OBJECTIVE: We present the methodology and results of the clinimetric testing program for non-English translations of Movement Disorder Society (MDS)-sponsored scales. The programs focus on the MDS-revision of the Unified Parkinson’s Disease Rating Scale (MDS-UPDRS) and the Unified Dyskinesia Rating Scale (UDysRS). BACKGROUND: The original development teams of both the MDS-UPDRS and UDysRS envisioned official non-English translations and instituted a rigorous translation methodology. DESIGN/METHODS: The formal translation process includes five core steps: 1) registration and start-up ; 2) translation and independent back-translation ; 3) Cognitive pre-testing to establish that the translation is clear and that it is comfortably administered to and completed by native-speaker raters and patients; 4) Field testing in the native language using a large sample of PD patients; 5) Full clinimetric testing with a resultant Comparative Fit Index of > 0.90. To be designated as an Official Translation, the language version must successfully pass all five steps. RESULTS: To date, the MDS-UPDRS has 20 active language programs. Seven Official Translations are available, having completed all phases successfully and the others are in different stages of development. For the UDysRS, 18 programs are active, with three Official Translations now available and the rest in development at different stages. CONCLUSIONS: Very few scales in neurology and none in movement disorders have fully validated translations, and this model may be adopted or modified by other scale programs to allow careful validation of translations. Having validated translations allows for maximal homogeneity of tools utilized in multicenter research or clinical trial programs. Study Supported by: The Movement Disorder Society. The Rush Center is supported by the Parkinson9s Disease Foundation Disclosure: Dr. Goetz has received personal compensation for activities with AOP Orphan, Addex Pharma, Advanced Studies of Medicine, Boston Scientific Corp., CHDI Foundation, Health Advances, ICON Clinical Research, Ingenix, and the National Institutes of Health. Dr. Goetz has received personal compensation in an editorial capacity for Oxford University Press, Elsevier Publishers, Wolters Kluwer Health-Lippincott, Wilkins and Williams, Movement Disorder, American Academy of Neurology, and the Unviersity of Pennsylvania. Dr. Goetz has received research support from the National Institutes of Health, the Michael J Fox Foundation, and The Parkinson9s Disease Foundation. Dr. Stebbins has received personal compensation for activities with Adamas Pharmaceuticals, Ceregene Inc., CHDI Management, Ingenix Pharmaceuticals, and Neurocrine Biosciences as a consultant. Dr.Wang has received personal compensation for activities with the University of Texas. Dr. LaPelle has received personal compensation for activities with the University of Massachusetts Medical School, and The Association of Academic Health Center. Dr. LaPelle has received research support from principal investigators at University of Massachusetts Medical School and MUSC. Dr. Luo has received personal compensation for activities with the University of Texas. Dr. Luo has received research support from the National Institutes of Health. Dr. Tilley has received personal compensation for activities with Pfizer Inc., and Novartis, and with the University of Texas School of Public Health as an employee. Dr. Tilley has received research support from the Movement Disorder Society, the National Institutes of Health, and Pfizer Inc.