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eurILDreg - Survival status and Lung transplant

- 2024-08-14 - 32 Formulär, 5 Item-grupper, 63 Dataelement, 1 Språk
Item-grupper: Survival status and Lung transplant, Lung trasplant, Survival status and Lung transplant, <div class="rich-text-field-label"><p>FATAL EVENT QUESTIONNAIRE</p></div>, Survival status and Lung transplant
This file contains the metadata, events, and data for REDCap project "eurILDreg".

Lung Function and Diffusion Capacity at Site

5 Item-grupper 22 Dataelement

Lung function - handheld spirometers measurements

2 Item-grupper 14 Dataelement

K-BILD Questionnaire

2 Item-grupper 16 Dataelement

Leicester Cough Questionnaire

2 Item-grupper 20 Dataelement

MDT board diagnosis

3 Item-grupper 70 Dataelement

Supportive therapy and immunisation

4 Item-grupper 14 Dataelement

LEOSS: Lean European Open Survey on SARS-CoV-2 Infected Patients - Pulmonary sub-cohort

- 2021-07-01 - 1 Formulär, 6 Item-grupper, 30 Dataelement, 1 Språk
Item-grupper: Chronic pulmonary disease other than asthma and copd, Oxygen ventilation/ oxygen support before SARS-CoV-2 detection, Regular use of inhaler, Prior pulmonary function (Spirometrie) before COVID-19, Pulmonary function (Spirometrie) at diagnosis of COVID-19, Is data entry for this section finished?
Study Title: LEOSS: Lean European Open Survey on SARS-CoV-2 Infected Patients https://leoss.net Study Indication: COVID-19 Date: 21.03.2021 Published with permission by Prof. Dr. med. J.-J. Vehreschild. LEOSS, a multi-center cohort study, has been created to get more in-depth knowledge about the epidemiology and clinical course of patients infected with SARS-CoV-2. Initiated by the ESCMID Emerging Infections Task Force (EITaF) and the German Infectious Disease Society, and supported by all German Centers for Health Research (DZG), LEOSS has developed into an international network of contributors. Via an integrative research approach with anonymous recruitment and collection of routine data in an open science context, LEOSS is building a uniform clinical dataset and providing real-time analyses. For more information feel free to explore https://leoss.net/. This document is for the pulmonary sub-cohort. If a text field can't be filled out, note 'ND'.

LEOSS: Lean European Open Survey on SARS-CoV-2 Infected Patients - Pulmonary sub-cohort

- 2021-07-16 - 23 Formulär, 6 Item-grupper, 30 Dataelement, 1 Språk
Item-grupper: Chronic pulmonary disease other than asthma and copd, Oxygen ventilation/ oxygen support before SARS-CoV-2 detection, Regular use of inhaler, Prior pulmonary function (Spirometrie) before COVID-19, Pulmonary function (Spirometrie) at diagnosis of COVID-19, Is data entry for this section finished?
Study Title: LEOSS: Lean European Open Survey on SARS-CoV-2 Infected Patients https://leoss.net Study Indication: COVID-19 Date: 19.03.2021 Published with permission by Prof. Dr. med. J.-J. Vehreschild. LEOSS, a multi-center cohort study, has been created to get more in-depth knowledge about the epidemiology and clinical course of patients infected with SARS-CoV-2. Initiated by the ESCMID Emerging Infections Task Force (EITaF) and the German Infectious Disease Society, and supported by all German Centers for Health Research (DZG), LEOSS has developed into an international network of contributors. Via an integrative research approach with anonymous recruitment and collection of routine data in an open science context, LEOSS is building a uniform clinical dataset and providing real-time analyses. For more information feel free to explore https://leoss.net/. Please note that only cases with known outcome are collected! Baseline / diagnosis is defined as the day the sample of the first positive SARS-CoV-2 result was taken. Criteria of the Uncomplicated Phase: Asymptomatic OR Symptoms of upper respiratory tract infection and/or Nausea, emesis, diarrhea and/or Fever Remember: The Uncomplicated Phase ends, if a previously febrile patient has no fever anymore and has completed 14 days of follow-up without entering Complicated or Critical Phase; then move to Recovery Phase. Also, as soon as one of the criteria of the Complicated or Critical Phase are fulfilled, Uncomplicated Phase ends; move over to there. If the patient has died, the phase ends with the death of the patient. If the patient has died, do not report terminal values, e.g. those recorded after switching off life-support or heart rate "0" after death of the patient. Criteria of the Complicated Phase: * Need for oxygen supplementation (In patients with prior oxygen home therapy, clinically meaningful increase in need for oxygenation.) * paO2 at room air < 70 mmHg * SO2 at room air < 90 % * GOT or GPT > 5x ULN * New cardiac arrhythmia * New pericardial effusion >1cm * New heart failure with pulmonary edema, congestive hepatopathy or peripheral edema Remember: The Complicated Phase ends, if none of the criteria for the Complicated Phase is fulfilled anymore AND the patient is free of fever; then move to Recovery Phase. Also, as soon as one of the criteria of the Critical Phase are fulfilled, Complicated Phase ends; move over to Critical Phase. If the patient has died, the phase ends with the death of the patient. If the patient has died, do not report terminal values, e.g. those recorded after switching off life-support or heart rate "0" after death of the patient. Criteria of the Critical Phase: * Need for catecholamines * Life-threatening cardiac arrhythmia * Mechanical ventilation (invasive or non-invasive) * Liver failure with Quick< 50% * qSOFA >= 2 * Renal failure in need of dialysis Remember: The Critical Phase ends as soon as none of the criteria for the Critical Phase is fulfilled anymore AND the patient is free of fever. If the patient has died, it ends with the death of the patient. If the patient has died, do not report terminal values, i.e. those recorded after turning off life-support or heart rate "0" after death of the patient. Criteria of the Recovery Phase: *Improvement by at least one phase, i.e. Critical to Complicated or Complicated to Uncomplicated * Defervescence Remember: Uncomplicated asymptomatic patients enter recovery phase after 14 days of observation without disease progression No further progression or re-hospitalization If a text field can't be filled out, note 'ND' (for not determined).

Baseline I

39 Item-grupper 280 Dataelement

Emergency care details

11 Item-grupper 43 Dataelement

Recovery Phase

15 Item-grupper 80 Dataelement

Uncomplicated Phase

20 Item-grupper 120 Dataelement

Complicated Phase

28 Item-grupper 155 Dataelement

Critical Phase

32 Item-grupper 188 Dataelement

German Resuscitation Registry (Reanimationsregister Version 2.0) - Module Telephone CPR (Modul Telefon-CPR)

- 2020-03-18 - 1 Formulär, 9 Item-grupper, 17 Dataelement, 2 Språk
Item-grupper: Basic Data, Telephone instructions for CPR, Time end of instructions, Instructions complete, Instructed Ventilation, Used algorithm, Headquarters dispatcher trained, Indication Cardiopulmonary Arrest correct, bystander resuscitation conducted
The German Resuscitation Registry (GRR) (Das Deutsche Reanimationsregister) is a supraregional database for the collection and evaluation of resuscitations in rescue services and clinics, as well as for intraclinical emergency care in Germany. https://www.reanimationsregister.de/downloads/formulare.html The translation of the document from english to german is not an offical translation.

German Rescuitation Registry (Reanimationsregister Version 2.0) - Secondary care max (Weiterversorgung Max)

- 2020-03-18 - 1 Formulär, 11 Item-grupper, 135 Dataelement, 2 Språk
Item-grupper: Basic Data, Admittance dates and status, Clinical measures, Temperature management, Temperature management Induction, Temperature management Maintenance, Temperature management Rewarming, Temperature management Fever prevention, Neuroprognostic tests, Result, Acquisition Status
Angaben für die Description: The German Resuscitation Registry (GRR) (Das Deutsche Reanimationsregister) is a supraregional database for the collection and evaluation of resuscitations in rescue services and clinics, as well as for intraclinical emergency care in Germany. https://www.reanimationsregister.de/downloads/formulare.html The translation is not an official translation. The TIMI risk score is part of this form. Morrow, D. A.; Antman, E. M.; Charlesworth, A.; Cairns, R.; Murphy, S. A.; Lemos, J. A. de et al. (2000): TIMI risk score for ST-elevation myocardial infarction: A convenient, bedside, clinical score for risk assessment at presentation: An intravenous nPA for treatment of infarcting myocardium early II trial substudy. In: Circulation 102 (17), S. 2031–2037. The modified Rankin-scale is part of this form. Rankin J. Cerebral vascular accidents in patients over the age of 60: II. Prognosis Scottish Med J. 1957; 2: 200–215. The Cerebral Performance Category is part of this form. Jennett B, Bond M. Assessment of outcome after severe brain damage. Lancet. 1975 Mar 1;1(7905):480-4. The EQ-5D is part of this form. The EuroQol Group. EuroQol—a new facility for the measure-mentofhealth-relatedqualityoflife.HealthPolicy.1990;36:199–208. The SF-12 is part of this form. Ware J, Kosinski M, Keller SD. A 12-item short-form health survey:construction of scales and preliminary tests of reliability and validity. MedCare. 1996;34:220–33.

REGIMS Multiple Sclerosis Immunotherapy Registry Version 2016 - Baseline Pregnancy Part 1

- 2021-09-20 - 9 Formulär, 5 Item-grupper, 24 Dataelement, 2 Språk
Item-grupper: Daten der Patientin, Schwangerschaft, Relevante Anamnese (Grunderkrankung, Begleiterkrankungen, Allergien, Risikofaktoren, ...), MS-Medikation, Andere Medikation vor / während der Schwangerschaft
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.

Follow Up Pregnancy Part 1

5 Item-grupper 24 Dataelement

Baseline Main Sheet

25 Item-grupper 116 Dataelement

German Rescuitation Registry (Reanimationsregister Version 2.0) - Further medical care pediatrics (Weiterversorgung Pädiatrie)

- 2020-03-18 - 1 Formulär, 7 Item-grupper, 84 Dataelement, 2 Språk
Item-grupper: Basic Data, Admission Status, Temperature management, Clinical Course, Complications, Outcome Data on discharge from acute care, Aquisition Status
The German Resuscitation Registry (GRR) (Das Deutsche Reanimationsregister) is a supraregional database for the collection and evaluation of resuscitations in rescue services and clinics, as well as for intraclinical emergency care in Germany. https://www.reanimationsregister.de/downloads/formulare.html The translation of the document from english to german is not an offical translation.

AKTIN: Basismodul des Notaufnahmeprotokolls - Emergency Anamnesis, Ailments, basic patient data and allergies

- 2021-09-20 - 5 Formulär, 7 Item-grupper, 45 Dataelement, 2 Språk
Item-grupper: Emergency Anamnesis, Medication Anamnesis, Prehospital emergency Medication, Medical condition leading to Emergency Room contact, Patient Basic Clinical Data, Multiple Drug Resistence, Allergies
AKTIN: Verbesserung der Versorgungsforschung in der Akutmedizin in Deutschland durch den Aufbau eines Nationalen Notaufnahmeregisters (Establishment of a German Registry for Emergency Room Care) This study is the Basic module of the Emergency Room protocol used for the AKTIN project (Version v2015.2-b from 2018-03-23). https://aktin.org/ ODM derived from http://art-decor.org/decor/services/RetrieveTransaction?language=de-DE&version=2018-03-23T20%3A16%3A38&hidecolumns=45ghi&id=2.16.840.1.113883.2.6.60.3.1.3&effectiveDate=2015-11-01T00%3A00%3A00&format=html

DZHK Data Catalogue - 6-Minute Walking Test

- 2019-10-08 - 1 Formulär, 4 Item-grupper, 23 Dataelement, 2 Språk
Item-grupper: 6 Minute Walking Test details, Examination, Borg Scale, Aids/Examination equipment and 6MWT stop criteria
With permission from the DZHK administrative office. http://dzhk.de The DZHK (Deutsches Zentrum für Herz-Kreislauf-Forschung e.V.; German Center for Cardiovascular Research) is a joint cooperation of twenty-eight institutions in seven locations throughout Germany to develop a common research strategy. They developed a data catalogue with metadata and data as well as information about available biological materials from all their studies. For more information on the data catalogue and access to actual data and biosamples please visit https://dzhk.de/en/resources/data-manual/ . This version contains the metadata part only. The form6-Minute Walking Test is used to document the results of the 6-minute walking test. The test evaluates the functional reserves and the degree of physical tolerance of patients with chronic heart and lung diseases in their individual daily life as well as it records the course of the disease and the success of therapeutic measures. The time between this test and other physical stress tests (e.g. ergometry or cardiovascular exercise test) should not be less than 2 hours; ideally, the examination should be performed on a different day. This form uses the Borg scales of dyspnoea (Borg, G.A., Psychophysical bases of perceived exertion. Medicine and science in sports and exercise, 1982. 14(5): p. 377-81) and exertion (Borg, G., Anstrengungsempfinden und körperliche Aktivität. Dtsch Arztebl International, 2004. 101(15): p. 1016-). The documentation is to be performed according to the DZHK's SOPs, which can be accessed at https://dzhk.de/en/resources/sops/ (or https://dzhk.de/ressourcen/sops/ for the German language versions). The SOP for this form is "6-minute walking test (6MWT)" (version 1.0, valid as of 01/09/2014) for the English language version, and "6-Minuten-Gehtest (6MWT)" (version 1.0, valid as of 01/09/2014) for the German version.

LEOSS: Lean European Open Survey on SARS-CoV-2 Infected Patients - Baseline I

- 2021-06-24 - 1 Formulär, 39 Item-grupper, 280 Dataelement, 1 Språk
Item-grupper: Sociodemography, Comorbidities, Central nervous system / Neurological disesases, Comorbidities, Cardiovascular diseases, Comorbidities, Pulmonary diseases, Comorbidities, Hematological / oncological diseases, Comorbidities, Rheumatological diseases, Comorbidities, Allergology, Comorbidities, Other internal disorders, Comorbidities, Other conditions, Body-Mass-Index (BMI), Smoking status, Use of e-cigarettes and / or vaporizer?, Pre-existing treatment, Recent immunosuppressive medication, Colonisation with multi-resistant pathogens, Disease limiting life expectancy before positive SARS-CoV-2 testing, Follow-up duration after SARS-CoV-2 diagnosis, Last known status, Diagnosis context, COVID-19 diagnosis details, Complications at baseline: Thrombotic and thromboembolic manifestations, Complications at baseline: Neurological, Complications at baseline: Other severe organ damage, Complications at baseline: Other, Disease course, Duration (days) of..., Symptoms: Please click all symptoms which occurred in the respective clinical phase, Vitals, Lung ultrasound results at SARS-CoV-2 detection, Baseline: Chest CT results at SARS-CoV-2 detection, Heart function, Echocardiography: Ejection fraction (EF) at SARS-CoV-2 detection, Cardiovascular magnetic resonance imaging (CMR) performed in any clinical phase, Neurological diagnostic in various phases, Complementary and/or integrative medicine (CIM) used in any phase, Discussion of limitation of therapy during SARS-CoV-2 infection, Specialist palliative care during SARS-CoV-2 infection, Agreement to share data for scientific purposes, Biomaterial availability for research proposes, Participation in interventional clinical trials
Study Title: LEOSS: Lean European Open Survey on SARS-CoV-2 Infected Patients https://leoss.net Study Indication: COVID-19 Date: 19.03.2021 Published with permission by Prof. Dr. med. J.-J. Vehreschild. LEOSS, a multi-center cohort study, has been created to get more in-depth knowledge about the epidemiology and clinical course of patients infected with SARS-CoV-2. Initiated by the ESCMID Emerging Infections Task Force (EITaF) and the German Infectious Disease Society, and supported by all German Centers for Health Research (DZG), LEOSS has developed into an international network of contributors. Via an integrative research approach with anonymous recruitment and collection of routine data in an open science context, LEOSS is building a uniform clinical dataset and providing real-time analyses. For more information feel free to explore https://leoss.net/. This document is for baseline information. A related document "Baseline II" documents further baseline information related to baseline timepoint and to disease periods. Baseline / diagnosis is defined as the day the sample of the first positive SARS-CoV-2 result was taken. Please note that only cases with known outcome are collected! If a text field can't be filled out, note 'ND' (for not determined).

REGIMS Registry Baseline - Baseline Pregnancy Part 1

- 2021-09-20 - 3 Formulär, 5 Item-grupper, 24 Dataelement, 2 Språk
Item-grupper: Daten der Patientin, Schwangerschaft, Relevante Anamnese (Grunderkrankung, Begleiterkrankungen, Allergien, Risikofaktoren, ...), MS-Medikation, Andere Medikation vor / während der Schwangerschaft
Baseline items for semantic analysis of the Multiple sclerosis immunotherapy registry REGIMS of the Institute of Epidemiology and Social Medicine of the University Hospital Münster provided by Prof. Dr. Klaus Berger and Dr. Maximov Stanislav.

Baseline Main Sheet

25 Item-grupper 116 Dataelement

Meldebogen Schwangerschaft - TEIL 1 (REGIMS) - Meldebogen für Schwangerschaft - TEIL 1

- 2021-03-15 - 1 Formulär, 10 Item-grupper, 46 Dataelement, 1 Språk
Item-grupper: Berichterstatters, Patientendaten, Schwangerschaft, Relevante Anamnese (Grunderkrankung, Begleiterkrankungen, Allergien, Risikofaktoren, ...), relevante Anamnese 2, Medizinische Angaben, MS-Medikdation 2: Medikation / Dosis / Einheit, Andere Medikation vor / wahrend der Schwangerschaft, Begleitmedikation 2: Handelsname / Dosis / Einheit, Begleitmedikation 3: Handelsname / Dosis / Einheit
siehe http://epi.uni-muenster.de

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