Keywords
Multiple Sclerosis ×
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Table of contents
  1. 1. Clinical Trial
  2. 2. Routine Documentation
  3. 3. Registry/Cohort Study
  4. 4. Quality Assurance
  5. 5. Data Standard
  6. 6. Patient-Reported Outcome
  7. 7. Medical Specialty
Selected data models

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- 9/20/21 - 9 forms, 4 itemgroups, 15 items, 2 languages
Itemgroups: Allgemeines,Grund dieser Visite bzw. dieses Kontaktes (Mehrfachauswahl),Ist seit der letzten Dokumentation für REGIMS (o. REGIMS-Visite)...,Eigene Bemerkungen / Klinischer Verlauf / Kommentar
REGIMS is a registry of the administration, adverse events and benefit of immunotherapeutic agents in patients with Multiple Sclerosis. REGIMS is a project from the Institute of Epidemiology and Social Medicine of the University of Muenster, publication granted by Prof. Dr. Berger. For further information (in German), please view http://campus.uni-muenster.de/index.php?id=6075 or http://www.kompetenznetz-multiplesklerose.de/aktuelle-studien/regims. REGIMS ist ein Immuntherapieregister zur Verbesserung der Arzneimittelsicherheit in der Multiple Sklerose Therapie innerhalb des krankheitsbezogenen Kompetenznetzes MS. Das primäre Ziel von REGIMS ist die Erfassung der Häufigkeit, Charakteristika und Auswirkungen von Nebenwirkungen aktueller und neuer Immuntherapien in der klinischen Routinebehandlung der MS. Sekundäre Ziele sind die Auswertung von Faktoren, die a) mit Nebenwirkungen und b) mit guter Therapie-Adhärenz assoziiert sind. Optional können bei Zustimmung der Patienten Blutproben für die Biobank des KKNMS gesammelt werden. Patienten mit Multipler Sklerose (MS) weisen trotz des chronischen Verlaufs eine große Heterogenität klinischer Symptome, in Befunden der Bildgebung sowie pathophysiologischen Prozessen auf. Faktoren, die zur individuellen Krankheitsprognose beitragen sind kaum bekannt, jedoch hat die Einführung neuer Substanzen die Therapiemöglichkeiten der MS in den letzten Jahren deutlich erweitert. Die Anwendung sogenannter Immuntherapeutika (inklusive der neuen Substanzklasse der Biologika) bietet in der MS-Therapie eine Reihe von Chancen, birgt aber auch Risiken.

Baseline Pregnancy Part 1

5 itemgroups 24 items

Follow Up Pregnancy Part 1

5 itemgroups 24 items

Follow Up Medication Change

3 itemgroups 11 items
- 12/9/14 - 1 form, 15 itemgroups, 119 items, 2 languages
Itemgroups: General information,First Symptoms,Diagnostic procedure within the past 12 months,Fatigability Multiple Sclerosis,Course,Aid, manufactured,Medical benefits,Medical benefits past 12 months,Treatment satisfaction,Family history,Symptoms within past 12 months,Medication within last 7 days,Demographics,Doctor visit,Quality of life
- 7/10/17 - 1 form, 1 itemgroup, 16 items, 2 languages
Itemgroup: openEHR-EHR-OBSERVATION.paced_auditory_serial_addition_test.v1.xml
- 9/27/21 - 1 form, 10 itemgroups, 43 items, 2 languages
Itemgroups: SUE,Patientenangaben,SUE: Beschreibung,SUE: Behandlung,SUE: Ausgang,SUE: MS-Medikation,SUE: Begleitmedikation,SUE: Relevante Vorerkrankung / Sypmtome,Ergebnisse der relevanten Diagnostischen Untersuchungen,Kontaktdaten des Berichterstatters
- 1/19/15 - 1 form, 9 itemgroups, 38 items, 2 languages
Itemgroups: General information,Disease-specific information,Current Symptoms Multiple Sclerosis,Past treatment Multiple Sclerosis,Current Therapy Multiple Sclerosis,Cortisone,MRT,Disease history,Pregnancy, current
- 5/12/22 - 4 forms, 1 itemgroup, 2 items, 1 language
Itemgroup: IG.1
https://www.ncbi.nlm.nih.gov/projects/gap/cgi-bin/study.cgi?study_id=phs001833.v1.p1 NCT00794352 The goal of "Comprehensive Multimodal Analysis of Neuroimmunological Diseases of the CNS" is to define the pathophysiological mechanisms underlying the development of disability in immune-mediated disorders of the central nervous system (CNS) and to distinguish these from physiological (and often beneficial) responses of the human immune system to CNS injury. The long-term objective of the trial is to acquire knowledge that would allow us to therapeutically inhibit the pathogenic mechanisms and enhance repair mechanisms in immune-mediated CNS diseases, thereby minimizing the extent of CNS tissue damage and promoting recovery. To date, 460 patients with a confirmed diagnosis of multiple sclerosis (MS) have been enrolled into the natural history clinical trial. In addition to standardized clinical, functional, neuroimaging and molecular/immunological data, blood samples were also collected for genetic research. However, only 299 study participants with confirmed MS currently have whole genome sequencing data available. In addition to the genome-wide data available for the 299 MS patients, this dbGaP submission provides demographic and phenotypic information for each subject collected at various points throughout the trial. We include race and family history of MS collected at the baseline visit as well as age and measures of disease severity collected at the most recent visit. As these data were randomized into discovery and validation cohorts, we also indicate the assigned group in the phenotypic data. It is hoped that these data may be applied to the development of clinically-useful tools such as diagnostic tests and new, sensitive scales of neurological disability, disease severity and CNS tissue destruction. Principal Investigator: Bibiana Bielekova, PhD. National Institutes of Health, Bethesda, MD, USA Funding Sources: Intramural Research Program of the National Institute of Allergy and Infectious Diseases. National Institutes of Health, Bethesda, MD, USA Acknowledgement Statement: Please cite/reference the use of dbGaP data by including the dbGaP accession phs001833.v1.p1.

F.2

1 itemgroup 2 items

F.3

1 itemgroup 7 items

F.4

1 itemgroup 5 items
- 12/12/14 - 1 form, 3 itemgroups, 8 items, 2 languages
Itemgroups: Inclusion criteria,Exclusion criteria,Comments

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