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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
    1. 7.1. Anesthesiology
    1. 7.2. Dermatology
    1. 7.3. ENT
    1. 7.4. Geriatrics
    1. 7.5. Gynecology/Obstetrics
    1. 7.6. Internal Medicine
      1. Hematology
      1. Infectious Diseases
      1. Cardiology/Angiology
      1. Pneumology
      1. Gastroenterology
      1. Nephrology
      1. Endocrinology/Metabolic Diseases
      1. Rheumatology
    1. 7.7. Neurology
    1. 7.8. Ophthalmology
    1. 7.9. Palliative Care
    1. 7.10. Pathology/Forensics
    1. 7.11. Pediatrics
    1. 7.12. Psychiatry/Psychosomatics
    1. 7.13. Radiology
    1. 7.14. Surgery
      1. General/Visceral Surgery
      1. Neurosurgery
      1. Plastic Surgery
      1. Thoracic Surgery
      1. Trauma/Orthopedics
      1. Vascular Surgery
    1. 7.15. Urology
    1. 7.16. Dental Medicine/OMS
Selected data models

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116 Search results.
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SOLKID-GNR - Klinische Untersuchungsdaten T0-Prä+T2

- 5/5/22 - 49 forms, 3 itemgroups, 24 items, 1 language
Itemgroups: Klinische Untersuchungsdaten T0-Prä+T2, Klinische Untersuchungsdaten T0-Prä+T2, Klinische Untersuchungsdaten T0-Prä+T2
Electronic case report forms for the "Safety of the Living Kidney Donor - German National Register" (SOLKID-GNR).

Op Informationen zur Spende T0-Prä

1 itemgroup 9 items

PHQ-15 T0-Prä

1 itemgroup 1 item

PHQ-Stress-PT

1 itemgroup 1 item

RS-13

1 itemgroup 1 item

PHQ-9

1 itemgroup 1 item

GAD-7

1 itemgroup 1 item

Eligibility Polycystic Kidney Disease NCT01873235

- 1/21/21 - 1 form, 2 itemgroups, 12 items, 1 language
Itemgroups: Inclusion Criteria, Exclusion Criteria
PKD Clinical and Translational Core Study; ODM derived from: https://clinicaltrials.gov/show/NCT01873235

LEOSS: Lean European Open Survey on SARS-CoV-2 Infected Patients - Critical Phase

- 6/23/21 - 1 form, 32 itemgroups, 188 items, 1 language
Itemgroups: CR: Cardiovascular findings, CR: Respiratory findings, CR: Other severe organ damage, CR: Fever, CR: Vitals, CR: Lung ultrasound, CR: worst chest CT result, CR: Antivirals, CR: Antibiotics, CR: Antifungals, CR: Immunomodulators, CR: Cardiovascular medication, CR: Non-oral anticoagulants, CR: Oral anticoagulants, CR: Platelet aggregation inhibition, CR: Further anticoagulation / platelet aggregation inhibition, CR: Other COVID-19 related therapy, CR: ICU treatment, CR: Mechanical ventilation, CR: Other extracorporeal support, CR: Co/Superinfections, CR: Antibacterial treatment: Betalactams, CR: Antibacterial treatment: Macrolides, CR: Other antibacterial treatment, CR: Complications, Thrombotic and thromboembolic manifestations, CR: Complications, Neurological, Ischemic stroke: TOAST classification, Ischemic stroke: NIHSS score in acute phase, CR: Complications, Other, Acute kidney injury (KDIGO criteria), CR: SOFA score, CR: 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/. This document is for data aggregated in the critical phase. If a text field can't be filled out, note 'ND'. 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, i.e. those recorded after turning off life-support or heart rate "0" after death of the patient.

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

- 7/16/21 - 23 forms, 10 itemgroups, 48 items, 1 language
Itemgroups: Etiology of liver cirrhosis, Hepatic decompensation (Ascites, Variceal bleeding, Hepatic encephalopathy), Reasons of consultation / hospitalisation, Liver transplantation waiting list, Recent bacterial infection, Child-Pugh Score at Baseline, MELD Score, Acute-on-chronic liver failure during the SARS-CoV-2 infection, Recent medication, 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).

Nephrological sub-cohort

5 itemgroups 17 items

Diabetes mellitus sub-cohort

11 itemgroups 26 items

Pulmonary sub-cohort

6 itemgroups 30 items

Diagnostics (General virological and laboratory findings for all phases)

46 itemgroups 320 items

Baseline I

39 itemgroups 280 items

Complicated Phase

28 itemgroups 155 items

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

- 5/6/21 - 1 form, 10 itemgroups, 48 items, 1 language
Itemgroups: Etiology of liver cirrhosis, Hepatic decompensation (Ascites, Variceal bleeding, Hepatic encephalopathy), Reasons of consultation / hospitalisation, Liver transplantation waiting list, Recent bacterial infection, Child-Pugh Score at Baseline, MELD Score, Acute-on-chronic liver failure during the SARS-CoV-2 infection, Recent medication, 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/. This document is for the liver cirrhosis sub-cohort. If a text field can't be filled out, note 'ND' (for not determined).

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

- 5/27/21 - 1 form, 5 itemgroups, 17 items, 1 language
Itemgroups: AKI, CKD, CKD etiology, Dialysis, 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/. This document is for the nephrological sub-cohort. If a text field can't be filled out, note 'ND'.

eurILDreg - Laboratory results

- 8/14/24 - 32 forms, 31 itemgroups, 242 items, 1 language
Itemgroups: LABORATORY VALUES:, Blood cell count, Laboratory results, White cell count, Laboratory results, Clinical chemistry, Laboratory results, Immunglobulins, Laboratory results, Autoantibodies, Laboratory results, ANA Screening, Laboratory results, ANA DIFFERENTIATION , Laboratory results, ENA DIFFERENTIATION, Laboratory results, RA SCREENING, Laboratory results, MYOSITIS/DERMATOMYOSITIS SCREENING, Laboratory results, VASCULITIS SPECIFIC ANTIBODIES, Laboratory results, OTHER AUTO-ANTIBODIES , Laboratory results, THYROID GLAND SPECIFIC ANTIBODIES, Laboratory results, PAP SPECIFIC AUTO ANTIBODIES, Laboratory results, PRECIPITIN SCREENING, Laboratory results
This file contains the metadata, events, and data for REDCap project "eurILDreg".

Survival status and Lung transplant

5 itemgroups 63 items

Lung Function and Diffusion Capacity at Site

5 itemgroups 22 items

Lung function - handheld spirometers measurements

2 itemgroups 14 items

K-BILD Questionnaire

2 itemgroups 16 items

Leicester Cough Questionnaire

2 itemgroups 20 items

MDT board diagnosis

3 itemgroups 70 items

NHL-BFM Registry 2012 Manifestations - Manifestations

- 7/4/16 - 1 form, 6 itemgroups, 39 items, 2 languages
Itemgroups: MANIFESTATIONS (Manifestiations defined only by metabolic activity (PET) without morhological correlate in CT scan should NOT be indicated as positive!, Peripheral lymph nodes (LN), Head and neck, Thorax, Abdomen, Other Localisations
NHL-BFM 2012 Registry. Principal Investigators: Birgit Burkhardt and Wilhelm Woessmann. NHL study group

EBMT Inherited Disorders General Information - EBMT Inherited Disorders

- 7/9/16 - 1 form, 8 itemgroups, 101 items, 1 language
Itemgroups: EBMT FORM GENERAL INFORMATION, PATIENT, DISEASE, SPECIFICATIONS OF THE DISEASE, STATUS OF DISEASE AT HSCT, ADDITIONAL TREATMENT POST-HSCT, BEST DISEASE RESPONSE AT 100 DAYS POST-HSCT, FORMS TO BE FILLED IN
ODM form derived from 16pp EBMT Multiple Myeloma 10PCD. please refer to: http://www.ebmt.org/Contents/Data-Management/Registrystructure/MED-ABdatacollectionforms/Pages/MED-AB-data-collection-forms.aspx

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

- 7/1/21 - 1 form, 6 itemgroups, 30 items, 1 language
Itemgroups: 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'.

Genereral information EBMT JUVENILE IDIOPATHIC ARTHRITIS (JIA)

- 10/2/16 - 1 form, 16 itemgroups, 133 items, 1 language
Itemgroups: Team, Patient, Disease, INITIAL DIAGNOSIS, FIRST LINE THERAPIES, DATE OF HSCT, STATUS OF DISEASE AT MOBILISATION, HAEMATOLOGICAL VALUES, CLINICAL AND LABORATORY DATA, AUTOANTIBODIES, RADIOGRAPHIC EVALUATION, HEALTH ASSESSMENT, PHYSICIAN’S ASSESSMENT, STATUS OF DISEASE AT HSCT, STATUS AT 100 DAYS POST-HSCT, FORMS TO BE FILLED IN
ODM derived from 20pp EBMT Arthritis 14JIA forms on http://www.ebmt.org/

ISARIC/WHO Novel Coronavirus (nCoV) / COVID-19 Case Record Form - MODULE 3: OUTCOME CASE REPORT FORM

- 9/20/21 - 1 form, 12 itemgroups, 138 items, 1 language
Itemgroups: Participant Identification, Treatment, Complications, Diagnostics, Biospecimen Testing, Antiviral therapy, Antibiotic therapy, Corticosteroids, Heparin, Antifungal therapy, Other treatments administered for COVID-19, Outcome
This CRF is set up in modules to be used for recording data on the ISARIC COVID-19 Core Database or for independent studies. Module 1 and Module 2 complete on the first day of presentation/admission or on first day of COVID-19 assessment. Module 2 also complete on first day of admission to ICU or high dependency unit. In addition, complete daily for as many days as resources allow up to a maximum of 14 days. Continue to follow-up patients who transfer between wards. Module 3 (Outcome) complete at discharge or death General Guidance: - The CRF is designed to collect data obtained through examination, interview and review of hospital notes. Data may be collected retrospectively if the patient is enrolled after the admission date. - For more detailed guidance on how to complete these forms, please refer to the CRF Completion Guideline - Participant Identification Numbers consist of a 3 digit site code and a 4 digit participant number. You can obtain a site code and registering on the data management system by contacting ISARIC. Participant numbers should be assigned sequentially for each site beginning with 0001. In the case of a single site recruiting participants on different wards, or where it is otherwise difficult to assign sequential numbers, it is acceptable to assign numbers in blocks or incorporating alpha characters. E.g. Ward X will assign numbers from 0001 or A001 onwards and Ward Y will assign numbers from 5001 or B001 onwards. Enter the Participant Identification Number at the top of every page. - Printed paper CRFs may be used for later transfer of the data onto the electronic database. - For participants who return for re-admission to the same site, start a new form with a different Participant Identification Number. Please check “YES-admitted previously” in the ONSET & ADMISSION section. Enter as 2 separate entries in the electronic database. - For participants who transfer between two sites that are both collecting data on this form, it is preferred to have the data entered by a single site as a single admission, under the same Participant Identification Number. When this is not possible, the first site should record “Transfer to other facility” as an OUTCOME, and the second site should start a new form with a new patient number and indicate “YES-transferred” in ONSET & ADMISSION. - Complete every line of every section, except for where the instructions say to skip a section based on certain responses. - Mark ‘Not done’ for any results of laboratory values that are not available, not applicable or unknown. - Avoid recording data outside of the dedicated areas. Sections are available for recording additional information. - If using paper CRFs, we recommend writing clearly in ink, using BLOCK-CAPITAL LETTERS. - Place an (X) when you choose the corresponding answer. To make corrections, strike through (-------) the data you wish to delete and write the correct data above it. Please initial and date all corrections. - Please keep all of the sheets for a single participant together e.g. with a staple or participant-unique folder. - ISARIC would like the centers to enter data directly into their electronic data capture system. Please contact ISARIC about access. If your site would like to collect data independently, ISARIC can support you in the estabilishment of locally hosted databases. This version may serve as a basis for locally hosted databases. - Please contact ISARIC, if you need help with databases, have comments or to let ISARIC know that you are using the CRF. - Please let us know if you find any mistakes in the MDM Portal's version. FURTHER GUIDANCE AND DEFINITIONS (from the Completion guideline) Comorbidities: Comorbidities present before the onset of COVID-19 and are still present. Do not include those that developed following the onset of COVID-19 symptoms. More detailed guidance is provided. Hospital admission: For patients who were admitted to hospital with COVID-19 or symptoms consistent with possible COVID-19 infection, please enter details for the date of hospital admission. For patients with a clear alternative diagnosis leading to admission who subsequently acquired COVID-19, original admission date should be provided, but all subsequent references to admission should be taken as referring to day COVID-19 was first clinically suspected (or within the first 24 hours after first day of suspected or confirmed COVID-19 infection). Where a patient was admitted via multiple hospital departments, count admission from the time they came to the first department during the visit that led to their admission (e.g. arrival at the Emergency Department). Oxygen therapy: Include any form of supplemental oxygen received using any methods. Invasive ventilation: Please include any mechanical ventilation delivered following intubation or via a tracheostomy. Do not include patients who are breathing independently via a tracheostomy. Non-invasive ventilation: Please include any positive-pressure treatment given via a tight-fitted mask. This can be continuous positive pressure (CPAP) or bi-level positive pressure (BIPAP). Renal replacement therapy or dialysis: Please include any form of continuous renal replacement therapy or intermittent haemodialysis. Worst result: References to ‘worst result’ refer to those furthest from the normal physiological range or laboratory normal range. Results that were rejected by the clinical team (e.g. pulse oximetry on poorly perfused extremities, haemolysed blood samples, contaminated microbiology results) should not be reported. The following measures should be considered as a single observation and entered together: Blood gas results: Please report the measures from the blood gas with the lowest pH (most acidotic). Blood pressure: Please report the systolic and diastolic blood pressure from the observation with the lowest mean arterial pressure (if mean arterial pressure has not been calculated, report the measurement with lowest systolic blood pressure). Respiratory rate: If both abnormal low and high rate observed, record the abnormally high rate. General information about ISARIC ISARIC has developed a portfolio of resources to accelerate outbreak research and response. All resources are designed to address the most critical public health questions, have undergone extensive review by international clinical experts, and are free to use. ISARIC should be acknowledged and informed if you implement the protocol. Ethical apporval of the protocol and all necessary operational and financial arrangements are the responsibility of the investigators. This form refers to the CoV CASE RECORD FORM Version 1.3 25 Aug 2020. See https://isaric.tghn.org/COVID-19-CRF/

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