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Neuroinflammatory demyelinating diseases CNS Common Data Elements

- 9/17/21 - 1 form, 13 itemgroups, 46 items, 2 languages

Itemgroups: Diagnosis Demyelinating disease of central nervous system, MS, NMOSD, Acute disseminated encephalomyelitis (ADEM), CSF, Current relapse, Previous relapses, EDSS, Current therapy, Risk stratification Natalizumab, Previous Therapy, MRI Results, Other medical information

Common Data Elements for Neuroinflammatory Demyelinating Diseases of the central nervous system (NID CDEs). The NID CDEs may be used in clinical routine, clinical trial and registry documentation of Multiple Sclerosis (MS), Neuromyelitis Optica Spectrum Disorders (NMOSD) and Acute Disseminated Encephalomyelitis (ADEM). The NID CDEs were developed by the Institute of Medical Informatics of the University Muenster in cooperation with the Department of Neurology of the University Hospital Muenster.

Neuroinflammatory demyelinating diseases CNS Common Data Elements - Benutzerumfrage nach Einsatz der Basisdokumentation neuroinflammatorische Erkrankungen (User survey after application of basic documentation neuroinflammatory diseases)

- 8/19/19 - 1 form, 4 itemgroups, 18 items, 2 languages

Itemgroups: System usability scale, Additional Data, Documentation time, Basic administrative documentation

Das Formular „Basisdokumentation neuroinflammatorische Erkrankungen“ wurde vom Institut der Medizinischen Informatik in Kooperation mit der Klinik für Neurologie am Universitätsklinikum Münster entwickelt. Es wurde zur Strukturierung und Harmonisierung der Anamnese bzw. Dokumentation von Patienten mit entzündlich-demyelinisierenden Erkrankungen des ZNS entwickelt. Hierbei dient es der Erfassung der erkrankungsspezifischen „Kernelemente“ zur Multiplen Sklerose, Neuromyelitis optica und Akuten disseminierten Enzephalomyelitis. Das Ziel der Umfrage ist die Zufriedenheit der Dokumentationsabläufe vor demEinsatz der Basisdokumentation (hierzu zählt das mehrfache Erheben der Daten zuverschiedenen Zwecken in verschiedenen Systemen – beispielsweise zunächst auf Papier, gefolgt von der Übertragung in die elektronische Patientenakte und denArztbrief, oder zum Diktat inkl. Rückfragen aus dem Schreibbüro) mit derZufriedenheit mit Einsatz der Basisdokumentation (Eingabe der Daten in dasFormular, Nutzung des Textbausteins) zu vergleichen. Die enthaltene "system usability scale" stammt von Brooke, J.: SUS: a "quick and dirty" usability scale. In: P. W. Jordan, B. Thomas, B. A. Weerdmeester, & A. L. McClelland (Hrsg.): Usability Evaluation in Industry. London: Taylor and Francis, 1996. Unter folgendem Link ist die Basisdokumentation zu finden: https://medical-data-models.org/29131 The form "Basisdokumentation neuroinflammatorische Erkrankungen" was developed by the Institute of Medical Informatics in cooperation with the department of neurology at the university hospital Münster. It was developed to structure and harmonize medical history and documentation of patients with inflammatory demyelinating diseases of the central nervous system. It serves to record the disease-specific "core elements" of multiple sclerosis, neuromyelitis optica and acute disseminated encephalomyelitis. The aim of the survey is to compare the satisfaction of documentation processes before the use of the basic documentation (this includes the multiple collection of the data for different purposes in different systems - for example first on paper, followed by the transfer into the electronic patient file and the doctor's letter, or on the dictation including queries from the typing office) with the satisfaction of use of the basic documentation (input of the data into the form, use of the text module). The included "system usability scale" originates from Brooke, J.: SUS: a "quick and dirty" usability scale. In: P. W. Jordan, B. Thomas, B. A. Weerdmeester, & A. L. McClelland (Ed.): Usability Evaluation in Industry. London: Taylor and Francis, 1996. The basic documentation can be found here: https://medical-data-models.org/29131

Neuroinflammatory demyelinating diseases CNS Common Data Elements - Benutzerumfrage vor Einsatz der Basisdokumentation neuroinflammatorische Erkrankungen (User survey before application of basic documentation neuroinflammatory diseases)

- 8/19/19 - 1 form, 3 itemgroups, 17 items, 2 languages

Itemgroups: System usability scale, Documentation time, Basic administrative documentation

Das Formular „Basisdokumentation neuroinflammatorische Erkrankungen“ wurde vom Institut der Medizinischen Informatik in Kooperation mit der Klinik für Neurologie am Universitätsklinikum Münster entwickelt. Es wurde zur Strukturierung und Harmonisierung der Anamnese bzw. Dokumentation von Patienten mit entzündlich-demyelinisierenden Erkrankungen des ZNS entwickelt. Hierbei dient es der Erfassung der erkrankungsspezifischen „Kernelemente“ zur Multiplen Sklerose, Neuromyelitis optica und Akuten disseminierten Enzephalomyelitis. Das Ziel der Umfrage ist die Zufriedenheit der Dokumentationsabläufe vor dem Einsatz der Basisdokumentation (hierzu zählt das mehrfache Erheben der Daten zuverschiedenen Zwecken in verschiedenen Systemen – beispielsweise zunächst auf Papier, gefolgt von der Übertragung in die elektronische Patientenakte und denArztbrief, oder zum Diktat inkl. Rückfragen aus dem Schreibbüro) mit der Zufriedenheit mit Einsatz der Basisdokumentation (Eingabe der Daten in dasFormular, Nutzung des Textbausteins) zu vergleichen. Die enthaltene "system usability scale" stammt von Brooke, J.: SUS: a "quick and dirty" usability scale. In: P. W. Jordan, B. Thomas, B. A. Weerdmeester, & A. L. McClelland (Hrsg.): Usability Evaluation in Industry. London: Taylor and Francis, 1996. Unter folgendem Link ist die Basisdokumentation zu finden: https://medical-data-models.org/29131 The form "Basisdokumentation neuroinflammatorische Erkrankungen" was developed by the Institute of Medical Informatics in cooperation with the department of neurology at the university hospital Münster. It was developed to structure and harmonize medical history and documentation of patients with inflammatory demyelinating diseases of the central nervous system. It serves to record the disease-specific "core elements" of multiple sclerosis, neuromyelitis optica and acute disseminated encephalomyelitis. The aim of the survey is to compare the satisfaction of documentation processes before the use of the basic documentation (this includes the multiple collection of the data for different purposes in different systems - for example first on paper, followed by the transfer into the electronic patient file and the doctor's letter, or on the dictation including queries from the typing office) with the satisfaction of use of the basic documentation (input of the data into the form, use of the text module). The included "system usability scale" originates from Brooke, J.: SUS: a "quick and dirty" usability scale. In: P. W. Jordan, B. Thomas, B. A. Weerdmeester, & A. L. McClelland (Ed.): Usability Evaluation in Industry. London: Taylor and Francis, 1996. The basic documentation can be found here: https://medical-data-models.org/29131

NINDS CDE Demographics Multiple Sclerosis - Demographics

- 3/15/21 - 1 form, 1 itemgroup, 8 items, 1 language

Itemgroup: Demographics

NINDS Common Data Elements, Multiple Sclerosis Demographics Used from the National Institute of Neurological Disorders and Stroke Common Data Elements (https://www.commondataelements.ninds.nih.gov/) References: Grinnon ST, Miller K, Marler JR, Lu Y, Stout A, Odenkirchen J, Kunitz S. National Institute of Neurological Disorders and Stroke Common Data Element Project - approach and methods. Clin Trials. 2012;9(3):322-9.

NINDS CDE History Data Source and Reliability Multiple Sclerosis - History Data Source and Reliability

- 6/26/16 - 1 form, 1 itemgroup, 7 items, 1 language

Itemgroup: Medical history

NINDS Common Data Elements, History Data Source and Reliability Used from the National Institute of Neurological Disorders and Stroke Common Data Elements (https://www.commondataelements.ninds.nih.gov/) References: Grinnon ST, Miller K, Marler JR, Lu Y, Stout A, Odenkirchen J, Kunitz S. National Institute of Neurological Disorders and Stroke Common Data Element Project - approach and methods. Clin Trials. 2012;9(3):322-9.

NINDS CDE Vital Signs Multiple Sclerosis - Vital Signs

- 9/20/21 - 1 form, 2 itemgroups, 14 items, 1 language

Itemgroups: Vital Signs, Pediatric

NINDS Common Data Elements, Multiple Sclerosis Vital Signs Used from the National Institute of Neurological Disorders and Stroke Common Data Elements (https://www.commondataelements.ninds.nih.gov/) References: Grinnon ST, Miller K, Marler JR, Lu Y, Stout A, Odenkirchen J, Kunitz S. National Institute of Neurological Disorders and Stroke Common Data Element Project - approach and methods. Clin Trials. 2012;9(3):322-9.

NINDS CDE Non-Imaging Diagnostics Recommendations Multiple Sclerosis - Non-Imaging Diagnostics Recommendations

- 4/13/21 - 1 form, 6 itemgroups, 52 items, 1 language

Itemgroups: ECG, Pulmonary Function Tests, Scalp Electroencephalogram, Immune Cell, Electrophysiology, Studies Nerve Conduction

NINDS Common Data Elements, Multiple Sclerosis Non-Imaging Diagnostics Recommendations Used from the National Institute of Neurological Disorders and Stroke Common Data Elements (https://www.commondataelements.ninds.nih.gov/) References: Grinnon ST, Miller K, Marler JR, Lu Y, Stout A, Odenkirchen J, Kunitz S. National Institute of Neurological Disorders and Stroke Common Data Element Project - approach and methods. Clin Trials. 2012;9(3):322-9.

NINDS CDE Laboratory Test Recommendations Table 6 – Urinalysis Multiple Sclerosis - Laboratory Test Recommendations Table 6 – Urinalysis

- 9/17/21 - 1 form, 1 itemgroup, 22 items, 1 language

Itemgroup: Urinalysis

NINDS Common Data Elements, Multiple Sclerosis Laboratory Test Recommendations Table 6 – Urinalysis Used from the National Institute of Neurological Disorders and Stroke Common Data Elements (https://www.commondataelements.ninds.nih.gov/) References: Grinnon ST, Miller K, Marler JR, Lu Y, Stout A, Odenkirchen J, Kunitz S. National Institute of Neurological Disorders and Stroke Common Data Element Project - approach and methods. Clin Trials. 2012;9(3):322-9.

NINDS CDE OCT Information Multiple Sclerosis - OCT Information

- 6/30/16 - 1 form, 1 itemgroup, 14 items, 1 language

Itemgroup: Information OCT

NINDS Common Data Elements, Multiple Sclerosis OCT Information Used from the National Institute of Neurological Disorders and Stroke Common Data Elements (https://www.commondataelements.ninds.nih.gov/) References: Grinnon ST, Miller K, Marler JR, Lu Y, Stout A, Odenkirchen J, Kunitz S. National Institute of Neurological Disorders and Stroke Common Data Element Project - approach and methods. Clin Trials. 2012;9(3):322-9.

NINDS CDE MRI Multiple Sclerosis - MRI

- 6/29/16 - 1 form, 1 itemgroup, 19 items, 1 language

Itemgroup: MRI

NINDS Common Data Elements, Multiple Sclerosis MRI Used from the National Institute of Neurological Disorders and Stroke Common Data Elements (https://www.commondataelements.ninds.nih.gov/) References: Grinnon ST, Miller K, Marler JR, Lu Y, Stout A, Odenkirchen J, Kunitz S. National Institute of Neurological Disorders and Stroke Common Data Element Project - approach and methods. Clin Trials. 2012;9(3):322-9.

NINDS CDE Genetics Multiple Sclerosis - Genetics

- 6/29/16 - 1 form, 2 itemgroups, 10 items, 1 language

Itemgroups: Genetics, Family history DNA Sample Banking

NINDS Common Data Elements, Multiple Sclerosis Genetics Used from the National Institute of Neurological Disorders and Stroke Common Data Elements (https://www.commondataelements.ninds.nih.gov/) References: Grinnon ST, Miller K, Marler JR, Lu Y, Stout A, Odenkirchen J, Kunitz S. National Institute of Neurological Disorders and Stroke Common Data Element Project - approach and methods. Clin Trials. 2012;9(3):322-9.

NINDS CDE Physical Exam Multiple Sclerosis - Physical Exam

- 6/29/16 - 1 form, 2 itemgroups, 48 items, 1 language

Itemgroups: Physical Exam, Physical examination Results

NINDS Common Data Elements, Multiple Sclerosis Physical Exam Used from the National Institute of Neurological Disorders and Stroke Common Data Elements (https://www.commondataelements.ninds.nih.gov/) References: Grinnon ST, Miller K, Marler JR, Lu Y, Stout A, Odenkirchen J, Kunitz S. National Institute of Neurological Disorders and Stroke Common Data Element Project - approach and methods. Clin Trials. 2012;9(3):322-9.

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