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Translation Program

MDS-UPDRS

The MDS Clinical Outcome Assessment Translation Program develops MDS Official non-English Translations of the MDS-NMS, MDS-UPDRS, MDS-NMS and UDysRS. Permission to translate these scales outside of this official program is not permitted. Individuals interested in participating in the development and validation of a non-English Translation Program will be required to follow the protocol below and are requested to submit a Non-English Translation Application.

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  MDS-established Protocol for Official Non-English Language Translations

Study Type: This is an observational study


Study Groups/Sites: 5-15 sites within each non-English language sphere


Study Period: One year: From the approval of the specific language translation program, teams will be given 18 months to complete the translation/back translation, cognitive testing, and validation phases. Data analysis, feedback to program teams and finalization of reports will take place within 3 months of full data set submission by the MDS Translation Steering Committee.


Study Population: Parkinson's disease patients whose native language is not English.


Primary Study Objective: To develop and validate Non-English translations of the MDS-NMS, MDS-UPDRS and/or UDysRS


Requirements for Participation:
Local translation/back-translation program will include two teams. One team will develop the forward translation (English to selected native language) and a second team will independently conduct a back-translation (native language translation to English). Both teams operate under one or two Primary Investigators (also referred to as Translation Leads), but otherwise are independent for this phase of the program.

For each team, at least one movement disorder specialist is required who is fluent in English and the native language. Other specialists (professional translator, linguist, cultural expert etc.) are optional.

The proposed list of these two teams and the raters who will participate in the validation phase will be submitted to the Chairs of the MDS Rating Scales Program, Dr. Glenn Stebbins and Dr. Pablo Martinez-Martin. This will be shared with members of the MDS Translation Steering Committee. Current members of the Translation Steering Committee include: Christopher Goetz, Glenn T. Stebbins, Pablo Martinez-Martin, Nancy R. LaPelle, and Sheng Luo. The Translation Steering Committee will grant approval to initiate the translation program.

The PI for each language group will agree on behalf of the team to publication guidelines which are as follows:

  • Investigators will have the responsibility to summarize their findings and submit them to the MDS.
  • They will be encouraged to submit findings for peer-review publication and will determine authorship independently of the Translation Steering Committee or MDS. Authors are encouraged to submit to the MDS journals, Movement Disorders or Movement Disorders - Clinical Practice, although acceptance is not guaranteed. They will agree to acknowledge the MDS Rating Scale Program, copyright ownership of the translated scale as belonging to MDS and list the members of the Translation Steering Committee along with other people who participated in the program.
  • The Chairs of the MDS Rating Scale Committee and Dr. Goetz will have final approval of the list of acknowledgments.
  • A copy of the final publication will be submitted to MDS and the Chairs of the Rating Scale Program.
  • Investigators understand that the Translation Program is on behalf of MDS and all translations remain under the copyright ownership of MDS.
  • Investigators agree that only the Official MDS Translation will be distributed once developed. Individuals interested in using the translation for a study will be directed to the MDS Permission Request Form to seek permissions from the Society. Licensing fees for funded research apply. Translation Teams will be provided 5 free uses of the scale within funded research after which a licensing fee will apply. Request for free use must be submitted by the Translation Lead.

Assessment Type:

Phase I:
Translation and back-translation

A forward translation will be developed by an independent translation team. Translations should be developed with an emphasis on meaning as opposed to a word by word literal translation. Following completion, a second team will independently translate the scale from the native language into English. A review and reconciliation between the forward and back-translation should be conducted and any discrepancies should be reviewed and corrected. Please ensure that this review includes examination of spelling and grammar. The translation must include all pages of the scale including the introductory page and corresponding score sheet. It is recommended that the English scale be used as a template for the new language translation so that the appearance and format of the scales are uniform.

MDS does not develop translations for a specific dialect or region. All language translations should be conducted to provide facile tools that can be used in any population utilizing a given language based on standard grammar and terminology. For these programs, the translation development team should consider the international representation of a given language to make it broadly applicable.

Once completed, the final translation (including updates from the reconciliation process), the fully completed forward translation, the fully completed back translation, and a reconciliation report, which lists the items that were examined and what decision was made along with the rationale (example: the word for X was replaced with Z as it portrays a more accurate meaning), will be submitted to Dr. Luo, Dr. Stebbins and the MDS Secretariat. The MDS Translation Steering Committee will review the submitted materials with attention to the back-translation and reconciliation report. If needed, independent reviewers will be requested to conduct a review of the final translation. A report will then be provided to the Translation Steering Committee.

The Translation Steering Committee will review the original submission and the critique of the back translation. Based on this review, revisions will be requested or the documents will be approved for Cognitive Testing.

During the review process, translation teams are requested to begin translation of the Cognitive Pre-testing documents. This form will be provided by MDS. Please see item two under Phase II: Cognitive Pre-Testing for more information.

The translation should be provided to the MDS Secretariat for a format review at this stage. The MDS copyright statement, “Copyright © [year] International Parkinson and Movement Disorder Society (MDS). All rights reserved.” will be included by the MDS Secretariat if it is not already present and the provisionally approved translation will be returned to the local translation team. A translation of the copyright statement can be provided.

Once approved, the final translation may be used in Phase II: Cognitive Pre-testing.

Phase II:
Cognitive Pre-testing

The provisionally approved translation will be administered in a set of approximately 10 PD patients for cognitive pre-testing. This phase will identify potentially culturally sensitive or complex items.

Questions will be asked to the patients and examiners after each targeted item in order to assess patient and examiner understanding and comfort, using a cognitive pre-testing guide (in English) prepared by a cognitive specialist (Nancy LaPelle). This guide should be translated into the native language by the translation team. The guide does not need to be back translated into English.

The translated cognitive pretesting forms should then be administered following administration of the scale. The rater administering the scale will be requested to complete a cognitive pre-test questionnaire and the patient will also be required to complete a cognitive –pre-test questionnaire. Please test the translation in patients that speak different dialects and consider the global nature of the language population. Collaborations with other centers can be conducted for this purpose. Please note that collection of data for the “Subject Registration Form” required in phase III is not required in this phase.

The translated cognitive pretesting guide will be used in conjunction with the translated scale to create language specific cognitive pretesting packets to be used during cognitive pretesting. These packets will be reviewed by the Translation Steering Committee.

Once data has been collected for 10 patients, please send the completed Cognitive Pre-testing forms and collected scale data for each participant to Dr. Luo and the MDS Secretariat. Please ensure that all data is de-identified. After statistical review by Dr. LaPelle of the data collected from the PD population, recommendations regarding problem areas will be sent to the translation team. In the event that major issues are identified, changes to the translation may be needed. For minor issues, a response from the translation team (in English) to Dr. Luo and Dr. Stebbins should be submitted and will be reviewed by the Translation Steering Committee for provisional approval of the translation. Following approval, the translation will be fully tested (Phase III).

If major problems are identified during the first round of cognitive pretesting, additional rounds may be required.

Once the translation is completed and approved, it will be termed the “Official Working Document”. The MDS Secretariat may license the scale to clinical trials interested in using the MDS Official Working document with the understanding that the scale has only completed the cognitive pre-testing phase. Changes to the translation should not be made following approval of the Official Working Document.
 

Phase III:
Large-scale validation testing.

Each translation team will administer the MDS-UPDRS to 350 PD patients (250 patients for the UDysRS and 300 patients for the MDS-NMS) on one visit. These patients should be native speakers of the language being tested and should represent a wide demographic of native language speakers. The patient sample should include samples from different ages, genders, severities of PD (determined by the patients Hoehn and Yar score), geographical regions and educational levels.

Data entry and analysis: Sites will be encouraged to collect data through the score sheet of the scale and a Subject Registration Form which collects demographic/disease-related variables. A unique patient identifier should be used per patient and recorded on the Score Sheet and corresponding Subject Registration Form. S. Scanned copies of the data collection sheets should be created into a single PDF file and submitted via a secure server to Dr. Luo. Alternatively, paper copies can be mailed if needed.

Statisticians in this program will provide the analyses required for verification of the translation. Other analyses that individual groups from each country wish to conduct can be handled by the team for each country and are not part of this program. Questions regarding individual sub-analyses and access to data will be directed to Dr. Luo and Dr. Stebbins.

Primary outcome for designation of approval: For the MDS-UPDRS, confirmatory factor analysis will be run against the established English version factor structure by each part. To be designated as an official translation, Comparative Fit Index (CFI) of the final model for each part of MDS-UPDRS must be ≥ 0.9 relative to the English version.

For the UDysRS, confirmatory factor analysis will be run against the established Spanish version factor structure by each part. To be designated as an official translation, Comparative Fit Index (CFI) of the final model for the entire UDysRS must be ≥ 0.9 relative to the Spanish version.*

For the MDS-NMS, confirmatory factor analysis will be run against the established English version factor structure by each part. To be designated as an official translation Comparitive Fit Index (CFI) from the confirmatory factor analysis (CFA) based on the score of nine domains (13 original subscale domains, A to M, excluding E, G, H, and I) of MDS-NMS must be ≥ 0.9 relative to the English version.

Once the translation has been completed and approved by the Translation Steering Committee, the statement “MDS Official Translation” will also be included in the footer of the translation and it will be posted on the MDS website. Permission to use the translation is required.

*The first large scale field testing for the UDysRS began with the Spanish translation.


Sample Size: For the MDS-UPDRS, there will be 350 subjects from each translation program spread among several sites. This calculation is based on the need for 5 subjects per item of the questionnaire in order to perform the statistical tasks needed to validate the instrument. There are 65 items on the MDS-UPDRS.

For the UDysRS, there will be 250 subjects from each translation program spread among several sites. This calculation is based on the need for 5 subjects per item of the questionnaire in order to perform the statistical tasks needed to validate the instrument. There are 26 items on the UDysRS.

For the MDS-NMS, there will be 300 subjects from each translation program spread among several sights. This calculation is based on the need for 5 subjects per item of the questionnaire in order to perform the statistical tasks needed to validate the instrument. There are 61 items on the MDS-NMS.


Inclusion Criteria: Patients with Parkinson’s disease fluent in the native language of the site. Given that dyskinesia does not occur in all PD patients, up to 10% of the UDysRS cohort (25 patients) are allowed to be enrolled if they do not report dyskinesia and therefore have potential entries of uniform zeroes.


Exclusion Criteria: Patients cannot be included if they do not have Parkinson’s disease. Further, they cannot be included if the language translation being tested is not the native language of the patient.


Study Intervention: None


Primary Outcome Measure: The MDS-UPDRS factor scores and CFI of the final model for each part of the MDS-UPDRS. The UDysRS factor scores and CFI of the final model for the entire UDysRS. The MDS-NMS factor scores and CFI based on the scores of nine domains (13 original subscale domains, A to M, excluding E, G, H, and I) of MDS-NMS.


Statistical Analysis: For the MDS-UPDRS, a confirmatory factor analysis will be run against the established English-version factor structure, by part. This will be done by Dr. Luo’s team. Similarly, for the UDysRS, Dr. Luo’s team will run a confirmatory factor analysis against the established Spanish-version factor structure, by part. For the MDS-NMS, a confirmatory factor analysis will be run on the nine domains against the established English-version factor structure. This will be done by Dr. Luo’s team as well.


Caveats: Translation Leads are invited to serve on the MDS Translation Committee. From time to time, additional review of the translation may be requested. Translation committee members are requested to assist with translation specific inquiries from the MDS Secretariat. Translation leads may be requested to assist with future language translations of other MDS-owned scales as members of the MDS Translation Committee.

Translation Program Contributors

MDS acknowledges and thanks the translation Program Leaders and contributors for the development and ongoing support of translations of the MDS-UPDRS, UDysRS, and MDS-NMS.

Contributors

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  Arabic

Ahmed Dahshan
Fatema Abdulla
Fatema Jamali
Hanan Amer
Hanan Khalil
Hatem Shehata
Jasem Al-Hashel
Jawad Bajwa
Majed Al-Otaibi
Mayis Aldughmi
Mishal Abu-Melh
Mohamad Farghal
Mouna Djebara
Muneer Abu Snineh
Nesma Abdelmonem
Nouf Al-Talai
Raja Mehanna
Riadh Gouider
Shaima Alaidy
Shaima Al Jaffery
Sonia Elbrawy
Tariq Mohammad
Walaa Kamel
Zakiyah Al-Daajani

 

  Armenian

Zaruhi Tavadyan
Mariam Isayan
Lusine Vardanyan
Samson Khachatryan

  Chinese (Traditional)

Anne Yin Yan CHAN
Mok Hing YIU
Ruey-Meei WU
Rwei-Ling YU
Vincent Chung Tong MOK
Yih-Ru WU
吳瑞美
余睿羚
吳逸如
莫仲棠
莫慶堯
陳然欣

  Chinese (Simplified)

Chengjie Mao
Chengyuan Song
Chunfeng Liu
Congcong Sun
Cuiping Zhao
Feifei Wang
Haiqiang Zou
Hong Jin
Hongbo LÜ
Hongying Zhang
Hui Zhang
Jagadish K Chhetri
Jiana Wei
Jianyuan Zhang
Jing Chen
Jing Ye
Jing Zhang
Jinghong Ma
Jinglin Hu
Lijun Liu
Ling Chen
Lulu Jiang
Piu Chan
Qiyu Guo
Shanshan Wang
Shaohua Xu
Sheng Zhuang
Si Chen
Wanru Chen
Wei Han
Wendan Li
Wenliang Niu
Xiaohong Li
Xiaojuan Dan
Xiaoqing Zhang
Xiaorui Pei
Yahui Li
Yan Qu
Yiming Liu
Yongfang Ma
Yu Hu
Yuan Li
Yuanyuan Zhu
Zhuqin Gu

  Estonian

Aive Liigant
Andres Asser
Janika Kõrv
Karin Rallmann
Katrin Sikk
Maarika Liik
Margit Lill
Mari Muldmaa
Pille Taba
Toomas Toomsoo
Ülle Krikmann

  Finnish

Valtteri Kaasinen
Filip Scheperjans
Mikko Kärppä
Jaana Korpela
Anna Brück
Jussi O T Sipilä
Juho Joutsa
Juha Järvelä
Johanna Eerola-Rautio
Mika H Martikainen
Katja Airaksinen
Glenn T Stebbins
Pablo Martinez-Martin
Christopher G Goetz
Jeffrey Lin
Sheng Luo
Eero Pekkonen

  French

Alexandrine Salis
Andrea Kistner
Angelica Vaccaro
Anna Castrioto
Bérengère Debilly
Bettina Debû
Carine Bonin
Céline Turcat
Christian Geny
Christine Tranchant
Claire Thalamas
David Maltête
Elena Moro
Emmanuel Broussolle
Estelle Dellapina
Fabienne Ory-Magne
Florence Cormier
Franck Durif
François Tison
Isabelle Benatru
Isabelle Le Ray
Isabelle Roullet Solignac
Jean-Christophe Corvol
Jean-Luc Houeto
Mahmoud Charif
Maurice Giroud
Monique Galitzky
Olivier Rascol
Paul Krack
Pierre Pelissier
Romain Lefaucheur
Sophie Arguillère
Stephan Klebe
Thomas Boraud
Umberto Spampinato
Valérie Cochen
Valérie Fraix
Véronique Chaigneau

  German

Anika Frank
Björn Falkenburger
Iñaki Schniewind
Jonas Bendig
Lisa Klingelhöfer
Tom Hähnel
Kathrin Brockmann

  Greek

Konitsiotis Spyridon
Sevasti Bostantjopoulou
Stathis Pantelis
Stefanis Leonidas
Tagaris George
Zoe Katsarou

  Hebrew

Achinoam Faust-Socher
Adi Ezra
Alina Rosenberg
Avi Gadoth
Avner Thaler
Aya Ber David
Barbara C. Tilley
Chava Peretz
Christopher G. Goetz
Glenn T. Stebbins
Herzl Shabtai
Jennifer Zitser
Marina Brozgol
Meir Kestenbaum
Nir Giladi
Pablo Martínez-Martín
Saar Anis
Sheng T. Luo
Tali Taichman
Talia Herman
Tanya Gurevich
Xuehan Ren
Yakov Balash
Yuanyuan Liu

  Hindi

Abhijit Das Gupta
Abu Zafar
Deepti Vibha
Garima Shukla
Madhuri Behari
Meena Gupta
Ravi Yadav
Sumit Singh
Vinay Goyal

  Hungarian

Adrián Tóth
Annamária Takáts
Edit Bosnyák
Endre Pál
Eszter Hidasi
Eszter Rigó
Ferenc Nagy
Gabriella Deli
György Dibó
Ildikó Késmárki
Júlia Lajtos
Katalin Takács
Krisztina Horváth
László Vécsei
Magdolna Bokor
Mihály Herceg
Norbert Kovács
Péter Ács
Péter Klivényi
Piroska Imre
Réka Horváth
Sámuel Komoly
Zsuzsanna Aschermann

  Italian

Alberto Albanese
Aldo Quattrone
Alessandra Nicoletti
Angela Matinella
Angelo Antonini
Antonella Caria
Aroldo Rossi
Barbara Tilley
Cesa Lorella Maria Scaglione
Christopher G Goetz
Claudio Pacchetti
Daniela Murgia
Flavio Di Stasio
Francesca Del Sorbo
Francesca Morgante
Gabriella Santangelo
Giampietro Nordera
Gianni Cossu
Gianni Pezzoli
Giovanna Calandra-Buonaura
Giovanni Abbruzzese
Giovanni Fabbrini
Glenn T Stebbins
Jing Huang
Leonardo Lopiano
Letterio Morgante
Luca Weis
Luigi Ferini-Strambi
Manuela Pilleri
Margherita Canesi
Maria Cristina Jori
Maria Salsone
Maria Chiara Sensi
Marina Picillo
Mario Zappia
Maurizio Zibetti
Michele Tinazzi
Monica Bandettini di Poggio
Nicola Tambasco
Paolo Barone
Paolo Martinelli
Pietro Cortelli
Roberta Biundo
Roberta Zangaglia
Roberto Marconi
Rocco Quatrale
Ruxandra Julia Vorovenci
Sara Meoni
Silvia Ramat
Tiziano Tamburini
Tommaso Bovi

  Japanese

Asako Takei
Atsushi Takeda
Fumihito Yoshii
Fusako Yokochi
Hidefumi Ito
Hideki Mochizuki
Hidemoto Saiki
Hideo Mori
Hideto Miwa
Hirohisa Watanabe
Hiroshi Naito
Hisako Kuno
Junya Kawamura
Kazuko Hasegawa
Kazunori Ito
Kazushi Takahashi
Kazuto Yoshida
Kenichi Fujimoto
Kenichi Kashiwabara
Masahiko Tomiyama
Masahiro Nomoto
Miho Murata
Nobutaka Hattori
Noriko Kawashima
Reiichi Kurisaki
Ryosuke Takahashi
Seiji Kikuchi
Takashi Abe
Tetsuya Maeda
Tomoyoshi Kondo
Yamamto Mitsutoshi
Yasuo Terayama
Yasuyuki Ohkuma
Yoshikazu Ugawa
Yoshikuni Mizuno
Yoshio Tsuboi

  Kazakh

Rauan Kaiyrzhanov
Chingiz Shashkin
Nazira Zharkinbekova
Gulnaz Kaishibayeva
Altynay Karimova
Talgat Khaibullin
Saltanat Abdraimova
Zhanybek Myrzayev
Altynay Zakirova
Sandugash Elubayeva
Karlygash Esembekova

  Lithuanian

Donatas Zailskas
Gintarė Baranauskienė
Gintautė Rutkauskaitė
Jevgenija Guk
Justina Jurkevičienė
Neringa Tutlienė
Rūta Kaladytė Lokominienė
Vaineta Valeikienė
Vytautas Lukošaitis

  Polish

Agata Gajos
Agnieszka-Gorzkowska
Andrzej Bogucki
Anna Krygowska-Wajs
Anna Wasilewska
Christopher G. Goetz
Dariusz Koziorowski
Ewa Koziorowska-Gawron
Glenn Stebbins
Grzegorz Opala
Jarosław Dulski
Jarosław Sławek
Jeffery Lin
Joanna Siuda
Katarzyna Potasz-Kulikowska
Magdalena Boczarska-Jedynak
Magdalena Koszewic
Magdalena Wójcik-Pędziwiatr
Małgorzata Michałowska
Marek Śmiłowski
Marta Leńska-Mieciek
Marta Piaścik-Gromada
Mateusz Toś
Monika Figura
Monika Rudzińska-Bar
Pablo Martinez-Martin
Piotr Janik
Sheng Luo
Sławomir Budrewicz
Urszula Fiszer
Xuehan Ren

  Portuguese

Alexandre Mendes
Ana Graça Velon
Ana Margarida Rodrigues
Ana Morgadinho
Andrea Magalhães
Carlos Rieder
Daniela Pereira Silva
Egberto Barbosa
Francisco Cardoso
Hélio Teive
Henrique Ferraz
João Lourenço
Joaquim Ferreira
Leonardo Coutinho
Maria José Rosas
Miguel Coelho
Miguel Gago
Miguel Grunho
Rita Moiron Simões
Thiago Cardoso Vale
Tiago Mestre
Victor Tumas

  Romanian

Aurora Constantinescu
Bogdan Popescu
Cecilia Rosca
Cristian Falup-Pecurariu
Horia Nicolae
Monica Moarcas
Oana Costache
Ovidiu Bajenaru

  Slovak

Egon Kurca
Frantisek Cibulcik
Jan Benetin
Jan Necpal
Katarina Danterova
Ladislav Gurcik
Matej Skorvanek
Michal Minar
Milan Grofik
Peter Valkovic
Vladimir Han

  Spanish

Adriana Cardozo
Alberto Bergareche-Yarza
Amelia Mendoza-Rodriguez
Ana Rojo Sebastián
Anabel Chade
Antonio Herranz Bárcenas
Barbara C. Tilley
Bárbara Vives Pastor
Berta Pascual Sedano
Carlos Singer
Carmen Rodriguez-Blazquez
Christopher G. Goetz
Eric Freire Álvarez
Esther Cubo
Fátima Carrillo
Francisco Javier Jiménez
Glenn T. Stebbins
Gurutz Linazasoro
Henry P. Moore
Hortensia Alonso Navarro
Ignacio J. Posada
Inés Legarda Ramírez
Ines Legarda
Irene Martínez‐Torres
Itziar Gastón Zubimendi
Jaime Kulisevski
Javier Pagonabarraga
Jing Huang
José Chacón Peña
Juan Carlos Martinez-Castrillo
Lydia Vela
Maria Dolores Sevillano
Maria José Torres Rodríguez
Maria Teresa Cáceres
Mario Alvarez-Sanchez
Mayela Rodriguez-Violante
Monica M. Kurtis
Nadege Van Blercon
Nancy LaPelle
Nelida Garretto
Oscar Gershanik
Pablo Martinez-Martin
Parkinson disease associations of Zaragoza, Burgos, and Soria
Pedro Clavero Ibarra
Renée Ribacoba
Tomoko Arakaki

  Thai

Apichart Pisarnpong
Jirada Sringean
Natlada Limotai
Onanong Phokaewvarangkul
Parnsiri Chairangsaris
Pattamon Panyakaew
Pawut Mekawichai
Prachaya Srivanitchapoom
Praween Lolekha
Priya Jagota
Roongroj Bhidayasiri
Sitthi Petchrutchatachart
Surat Singmaneesakulchai
Suwanna Setthawatcharawanich
Yuvadee Pitakpatapee

  Turkish

Ahmet Acarer
Ayşe Bora Tokçaer
Banu Özen Barut
Bülent Elibol
Buse Çağla Arı
Chistopher G Goetz
Ece Bayram
Esen Saka
Glenn T Stebbins
Gülay Kenangil
Haşmet Hanağası
Hatice Balaban
M Cenk Akbostancı
Murat Emre
Nazlı Durmaz Çelik
Nursel Aydın
Okan Doğu
Özge Yağcıoğlu Yassa
Rezzak Yılmaz
Seda Kibaroğlu
Sefer Rzayev
Serhat Özkan
Sevda Erer
Volkan Yılmaz
Zeynep Tüfekçioğlu

  Ukrainian

Anjan Bhattacharya
Anna Kushnir
Oleh Kachmar
Slavych Nataliia
Taras Voloshyn
Volodymyr Kozyavkin

  Urdu

Adnan Aslam
Arsalan Ahmad
Ayesha Aslam
Faheem Saeed
Haris Majid
Maryam Javed
Memoona Nasir
Muhammad Athar Javed
Nabeel Muzaffar Syed
Nyla Naeem Shahbaz
Qudsum Yousaf
Sadaf Iftikhar
Sajjad Ali
Shahid Mukhtar

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