Development and application of a clinical core data set for deep brain stimulation in Parkinson’s disease, dystonia or tremor: from data collection to data exchange and data sharing
Abstract Background Comprehensive clinical data regarding factors influencing the individual disease course of patients with movement disorders treated with deep brain stimulation might help to better understand disease progression and to develop individualized treatment approaches. Methods The clin...
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BMC
2025-01-01
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| Series: | Neurological Research and Practice |
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| Online Access: | https://doi.org/10.1186/s42466-024-00362-z |
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| author | Anna-Lena Hofmann Jonas Widmann Lilly Brandstetter Udo Selig Fabian Haug Julian Haug Rüdiger Pryss Jasper Mecklenburg Andrea Kreichgauer Philipp Capetian Christian J. Hartmann Christian Niklas Petra Ritter Patricia Krause Alfons Schnitzler Jens Volkmann Andrea A. Kühn Peter Heuschmann Kirsten Haas |
| author_facet | Anna-Lena Hofmann Jonas Widmann Lilly Brandstetter Udo Selig Fabian Haug Julian Haug Rüdiger Pryss Jasper Mecklenburg Andrea Kreichgauer Philipp Capetian Christian J. Hartmann Christian Niklas Petra Ritter Patricia Krause Alfons Schnitzler Jens Volkmann Andrea A. Kühn Peter Heuschmann Kirsten Haas |
| author_sort | Anna-Lena Hofmann |
| collection | DOAJ |
| description | Abstract Background Comprehensive clinical data regarding factors influencing the individual disease course of patients with movement disorders treated with deep brain stimulation might help to better understand disease progression and to develop individualized treatment approaches. Methods The clinical core data set was developed by a multidisciplinary working group within the German transregional collaborative research network ReTune. The development followed standardized methodology comprising review of available evidence, a consensus process and performance of the first phase of the study. To ensure high data quality, measures for standardized training, monitoring as well as plausibility and data quality tests were implemented. Results The clinical core data set comprises information about medical history, clinical symptoms, information about deep brain stimulation surgery, complications and outcome for the main neurological movement disorders Parkinson’s disease, tremor, and dystonia. Its applicability as well as data exchange and quality control was tested within the first phase of the study in 51 patients from Würzburg. Conclusions Within the ReTune project, a standardised clinical core data set for Parkinson’s disease, dystonia and tremor was developed. The collection as well as concepts for the implementation of monitoring and data exchange were elaborated and successfully tested. Trial registration number ClinicalTrials.gov (DRKS-ID: DRKS00031878). |
| format | Article |
| id | doaj-art-2fef9b41663c4ab48439de59b3e857ec |
| institution | Kabale University |
| issn | 2524-3489 |
| language | English |
| publishDate | 2025-01-01 |
| publisher | BMC |
| record_format | Article |
| series | Neurological Research and Practice |
| spelling | doaj-art-2fef9b41663c4ab48439de59b3e857ec2025-02-02T12:50:28ZengBMCNeurological Research and Practice2524-34892025-01-017111010.1186/s42466-024-00362-zDevelopment and application of a clinical core data set for deep brain stimulation in Parkinson’s disease, dystonia or tremor: from data collection to data exchange and data sharingAnna-Lena Hofmann0Jonas Widmann1Lilly Brandstetter2Udo Selig3Fabian Haug4Julian Haug5Rüdiger Pryss6Jasper Mecklenburg7Andrea Kreichgauer8Philipp Capetian9Christian J. Hartmann10Christian Niklas11Petra Ritter12Patricia Krause13Alfons Schnitzler14Jens Volkmann15Andrea A. Kühn16Peter Heuschmann17Kirsten Haas18Institute of Clinical Epidemiology and Biometry, Julius-Maximilians-Universität Würzburg (JMU)Institute of Clinical Epidemiology and Biometry, Julius-Maximilians-Universität Würzburg (JMU)Institute of Clinical Epidemiology and Biometry, Julius-Maximilians-Universität Würzburg (JMU)Institute of Clinical Epidemiology and Biometry, Julius-Maximilians-Universität Würzburg (JMU)Institute for Medical Data Science, University Hospital WürzburgInstitute for Medical Data Science, University Hospital WürzburgInstitute of Clinical Epidemiology and Biometry, Julius-Maximilians-Universität Würzburg (JMU)Department of Neurology and Experimental Neurology, Charité-Universitätsmedizin BerlinDepartment of Neurology and Experimental Neurology, Charité-Universitätsmedizin BerlinDepartment of Neurology, University Hospital WürzburgInstitute of Clinical Neuroscience and Medical Psychology, Medical Faculty and University Hospital Düsseldorf, Heinrich Heine University DüsseldorfInstitute for Medical Informatics, University Hospital HeidelbergBerlin Institute of Health at Charité – Universitätsmedizin BerlinDepartment of Neurology and Experimental Neurology, Charité-Universitätsmedizin BerlinInstitute of Clinical Neuroscience and Medical Psychology, Medical Faculty and University Hospital Düsseldorf, Heinrich Heine University DüsseldorfDepartment of Neurology, University Hospital WürzburgDepartment of Neurology and Experimental Neurology, Charité-Universitätsmedizin BerlinInstitute of Clinical Epidemiology and Biometry, Julius-Maximilians-Universität Würzburg (JMU)Institute of Clinical Epidemiology and Biometry, Julius-Maximilians-Universität Würzburg (JMU)Abstract Background Comprehensive clinical data regarding factors influencing the individual disease course of patients with movement disorders treated with deep brain stimulation might help to better understand disease progression and to develop individualized treatment approaches. Methods The clinical core data set was developed by a multidisciplinary working group within the German transregional collaborative research network ReTune. The development followed standardized methodology comprising review of available evidence, a consensus process and performance of the first phase of the study. To ensure high data quality, measures for standardized training, monitoring as well as plausibility and data quality tests were implemented. Results The clinical core data set comprises information about medical history, clinical symptoms, information about deep brain stimulation surgery, complications and outcome for the main neurological movement disorders Parkinson’s disease, tremor, and dystonia. Its applicability as well as data exchange and quality control was tested within the first phase of the study in 51 patients from Würzburg. Conclusions Within the ReTune project, a standardised clinical core data set for Parkinson’s disease, dystonia and tremor was developed. The collection as well as concepts for the implementation of monitoring and data exchange were elaborated and successfully tested. Trial registration number ClinicalTrials.gov (DRKS-ID: DRKS00031878).https://doi.org/10.1186/s42466-024-00362-zClinical core data setParkinson’s diseaseDystoniaTremorData exchange |
| spellingShingle | Anna-Lena Hofmann Jonas Widmann Lilly Brandstetter Udo Selig Fabian Haug Julian Haug Rüdiger Pryss Jasper Mecklenburg Andrea Kreichgauer Philipp Capetian Christian J. Hartmann Christian Niklas Petra Ritter Patricia Krause Alfons Schnitzler Jens Volkmann Andrea A. Kühn Peter Heuschmann Kirsten Haas Development and application of a clinical core data set for deep brain stimulation in Parkinson’s disease, dystonia or tremor: from data collection to data exchange and data sharing Neurological Research and Practice Clinical core data set Parkinson’s disease Dystonia Tremor Data exchange |
| title | Development and application of a clinical core data set for deep brain stimulation in Parkinson’s disease, dystonia or tremor: from data collection to data exchange and data sharing |
| title_full | Development and application of a clinical core data set for deep brain stimulation in Parkinson’s disease, dystonia or tremor: from data collection to data exchange and data sharing |
| title_fullStr | Development and application of a clinical core data set for deep brain stimulation in Parkinson’s disease, dystonia or tremor: from data collection to data exchange and data sharing |
| title_full_unstemmed | Development and application of a clinical core data set for deep brain stimulation in Parkinson’s disease, dystonia or tremor: from data collection to data exchange and data sharing |
| title_short | Development and application of a clinical core data set for deep brain stimulation in Parkinson’s disease, dystonia or tremor: from data collection to data exchange and data sharing |
| title_sort | development and application of a clinical core data set for deep brain stimulation in parkinson s disease dystonia or tremor from data collection to data exchange and data sharing |
| topic | Clinical core data set Parkinson’s disease Dystonia Tremor Data exchange |
| url | https://doi.org/10.1186/s42466-024-00362-z |
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