Tomas Kalincik1, Jens Kuhle2, Eugenio Pucci3, Juan Ignacio Rojas4, Magda Tsolaki5, Carmen-Adella Sirbu6, Mark Slee7, Helmut Butzkueven8. 1. Department of Medicine, The University of Melbourne, Melbourne, VIC, Australia/Department of Neurology, Royal Melbourne Hospital, Melbourne, VIC, Australia. 2. Neurology, Departments of Medicine, Biomedicine and Clinical Research, University Hospital Basel, Basel, Switzerland. 3. Neurology Unit, ASUR Marche AV3, Macerata, Italy. 4. Hospital Italiano de Buenos Aires, Buenos Aires, Argentina. 5. 3rd Department of Neurology, G. Papanikolaou Hospital, Aristotle University of Thessaloniki, Thessaloniki, Greece. 6. Central Military Emergency University Hospital, Bucharest, Romania. 7. Flinders University and Medical Centre, Adelaide, SA, Australia. 8. Department of Medicine, University of Melbourne, Melbourne, VIC, Australia/Department of Neurology, Royal Melbourne Hospital, Melbourne, VIC, Australia/Department of Neurology, Box Hill Hospital, Monash University, Melbourne, VIC, Australia.
Abstract
OBJECTIVE: Objective and reproducible evaluation of data quality is of paramount importance for studies of 'real-world' observational data. Here, we summarise a standardised data quality, density and generalisability process implemented by MSBase, a global multiple sclerosis (MS) cohort study. METHODS: Error rate, data density score and generalisability score were developed using all 35,869 patients enrolled in MSBase as of November 2015. The data density score was calculated across six domains (follow-up, demography, visits, MS relapses, paraclinical data and therapy) and emphasised data completeness. The error rate evaluated syntactic accuracy and consistency of data. The generalisability score evaluated believability of the demographic and treatment information. Correlations among the three scores and the number of patients per centre were evaluated. RESULTS: Errors were identified at the median rate of 3 per 100 patient-years. The generalisability score indicated the samples' representativeness of the known MS epidemiology. Moderate correlation between the density and generalisability scores (ρ = 0.58) and a weak correlation between the error rate and the other two scores (ρ = -0.32 to -0.33) were observed. The generalisability score was strongly correlated with centre size (ρ = 0.79). CONCLUSION: The implemented scores enable objective evaluation of the quality of observational MS data, with an impact on the design of future analyses.
OBJECTIVE: Objective and reproducible evaluation of data quality is of paramount importance for studies of 'real-world' observational data. Here, we summarise a standardised data quality, density and generalisability process implemented by MSBase, a global multiple sclerosis (MS) cohort study. METHODS: Error rate, data density score and generalisability score were developed using all 35,869 patients enrolled in MSBase as of November 2015. The data density score was calculated across six domains (follow-up, demography, visits, MS relapses, paraclinical data and therapy) and emphasised data completeness. The error rate evaluated syntactic accuracy and consistency of data. The generalisability score evaluated believability of the demographic and treatment information. Correlations among the three scores and the number of patients per centre were evaluated. RESULTS: Errors were identified at the median rate of 3 per 100 patient-years. The generalisability score indicated the samples' representativeness of the known MS epidemiology. Moderate correlation between the density and generalisability scores (ρ = 0.58) and a weak correlation between the error rate and the other two scores (ρ = -0.32 to -0.33) were observed. The generalisability score was strongly correlated with centre size (ρ = 0.79). CONCLUSION: The implemented scores enable objective evaluation of the quality of observational MS data, with an impact on the design of future analyses.
Entities:
Keywords:
Multiple sclerosis; cohort study; data reporting; generalisability; quality; representativeness
Authors: Maria Trojano; Mar Tintore; Xavier Montalban; Jan Hillert; Tomas Kalincik; Pietro Iaffaldano; Tim Spelman; Maria Pia Sormani; Helmut Butzkueven Journal: Nat Rev Neurol Date: 2017-01-13 Impact factor: 42.937
Authors: Johannes Lorscheider; Vilija G Jokubaitis; Tim Spelman; Guillermo Izquierdo; Alessandra Lugaresi; Eva Havrdova; Dana Horakova; Maria Trojano; Pierre Duquette; Marc Girard; Alexandre Prat; François Grand'Maison; Pierre Grammond; Eugenio Pucci; Cavit Boz; Patrizia Sola; Diana Ferraro; Daniele Spitaleri; Jeanette Lechner-Scott; Murat Terzi; Vincent Van Pesch; Gerardo Iuliano; Roberto Bergamaschi; Cristina Ramo-Tello; Franco Granella; Celia Oreja-Guevara; Helmut Butzkueven; Tomas Kalincik Journal: Neurology Date: 2017-08-09 Impact factor: 9.910
Authors: Marianna Vitkova; Ibrahima Diouf; Charles Malpas; Dana Horakova; Eva Kubala Havrdova; Francesco Patti; Serkan Ozakbas; Guillermo Izquierdo; Sara Eichau; Vahid Shaygannejad; Marco Onofrj; Alessandra Lugaresi; Raed Alroughani; Alexandre Prat; Catherine Larochelle; Marc Girard; Pierre Duquette; Murat Terzi; Cavit Boz; Francois Grand'Maison; Patrizia Sola; Diana Ferraro; Pierre Grammond; Helmut Butzkueven; Katherine Buzzard; Olga Skibina; Bassem I Yamout; Rana Karabudak; Oliver Gerlach; Jeannette Lechner-Scott; Davide Maimone; Roberto Bergamaschi; Vincent Van Pesch; Gerardo Iuliano; Elisabetta Cartechini; Maria José Sà; Radek Ampapa; Michael Barnett; Stella E Hughes; Cristina M Ramo-Tello; Suzanne Hodgkinson; Daniele L A Spitaleri; Thor Petersen; Ernest Gerard Butler; Mark Slee; Chris McGuigan; Pamela Ann McCombe; Franco Granella; Edgardo Cristiano; Julie Prevost; Bruce V Taylor; Josã Luis Sãnchez-Menoyo; Guy Laureys; Liesbeth Van Hijfte; Steve Vucic; Richard A Macdonell; Orla Gray; Javier Olascoaga; Norma Deri; Yara Dadalti Fragoso; Cameron Shaw; Tomas Kalincik Journal: Neurology Date: 2022-04-11 Impact factor: 11.800
Authors: Jordana Hughes; Vilija Jokubaitis; Alessandra Lugaresi; Raymond Hupperts; Guillermo Izquierdo; Alexandre Prat; Marc Girard; Pierre Duquette; Francois Grand'Maison; Pierre Grammond; Patrizia Sola; Diana Ferraro; Cristina Ramo-Tello; Maria Trojano; Mark Slee; Vahid Shaygannejad; Cavit Boz; Jeanette Lechner-Scott; Vincent Van Pesch; Eugenio Pucci; Claudio Solaro; Freek Verheul; Murat Terzi; Franco Granella; Daniele Spitaleri; Raed Alroughani; Jae-Kwan Jun; Adam Fambiatos; Anneke Van der Walt; Helmut Butzkueven; Tomas Kalincik Journal: JAMA Neurol Date: 2018-11-01 Impact factor: 18.302
Authors: Tomas Kalincik; Ibrahima Diouf; Sifat Sharmin; Charles Malpas; Tim Spelman; Dana Horakova; Eva Kubala Havrdova; Maria Trojano; Guillermo Izquierdo; Alessandra Lugaresi; Alexandre Prat; Marc Girard; Pierre Duquette; Pierre Grammond; Vilija Jokubaitis; Anneke van der Walt; Francois Grand'Maison; Patrizia Sola; Diana Ferraro; Vahid Shaygannejad; Raed Alroughani; Raymond Hupperts; Murat Terzi; Cavit Boz; Jeannette Lechner-Scott; Eugenio Pucci; Vincent Van Pesch; Franco Granella; Roberto Bergamaschi; Daniele Spitaleri; Mark Slee; Steve Vucic; Radek Ampapa; Pamela McCombe; Cristina Ramo-Tello; Julie Prevost; Javier Olascoaga; Edgardo Cristiano; Michael Barnett; Maria Laura Saladino; Jose Luis Sanchez-Menoyo; Suzanne Hodgkinson; Csilla Rozsa; Stella Hughes; Fraser Moore; Cameron Shaw; Ernest Butler; Olga Skibina; Orla Gray; Allan Kermode; Tunde Csepany; Bhim Singhal; Neil Shuey; Imre Piroska; Bruce Taylor; Magdolna Simo; Carmen-Adella Sirbu; Attila Sas; Helmut Butzkueven Journal: Neurology Date: 2020-12-28 Impact factor: 9.910
Authors: Jeffrey A Cohen; Maria Trojano; Ellen M Mowry; Bernard Mj Uitdehaag; Stephen C Reingold; Ruth Ann Marrie Journal: Mult Scler Date: 2019-11-28 Impact factor: 6.312
Authors: Olga von Bismarck; Theresa Dankowski; Björn Ambrosius; Nicole Hessler; Gisela Antony; Andreas Ziegler; Muna-Miriam Hoshi; Lilian Aly; Felix Luessi; Sergiu Groppa; Luisa Klotz; Sven G Meuth; Björn Tackenberg; Muriel Stoppe; Florian Then Bergh; Hayrettin Tumani; Tania Kümpfel; Martin Stangel; Christoph Heesen; Brigitte Wildemann; Friedemann Paul; Antonios Bayas; Clemens Warnke; Frank Weber; Ralf A Linker; Ulf Ziemann; Uwe K Zettl; Frauke Zipp; Heinz Wiendl; Bernhard Hemmer; Ralf Gold; Anke Salmen Journal: Neurol Neuroimmunol Neuroinflamm Date: 2018-03-01