Informatie:
Fout:
ID
46015
Beschrijving
This file contains the metadata, events, and data for REDCap project "eurILDreg".
Link
Trefwoorden
Versies (1)
- 14/8/24 14/8/24 - Max Blumenstock
Houder van rechten
Prof. Dr. med. Andreas Günther
Geüploaded op
14 de agosto de 2024
DOI
10.21961/mdm:46015
Licentie
Creative Commons BY-NC-SA 4.0
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eurILDreg
Informed consent
- StudyEvent: eurILDreg
- Informed consent
- Handheld spirometry substudy and Sniffphone
- Biometric data
- Medical history Baseline
- Patient Complaints and Physical examination
- Smoking history
- Comorbidity
- Family history
- ILD-related drugs and medical measures
- Environmental Exposure and Professional Activites
- Lung Function and Diffusion Capacity at Site
- Lung function - handheld spirometers measurements
- Gas exchange at rest & exercise and Sleep Evaluation
- LTOT and Ventilation
- Laboratory results
- Cardiac assessment
- Invasive diagnostic procedures
- Pathological pattern
- Radiographic pattern
- Clinical diagnosis
- MDT board diagnosis
- Medication
- Supportive therapy and immunisation
- Symptom survey
- Health care utilization
- Leicester Cough Questionnaire
- K-BILD Questionnaire
- EuroQol-5D-5L
- Biobanking
- Genetic analysis
- Survival status and Lung transplant
- Charlson Comorbidity Index
Similar models
Informed consent
- StudyEvent: eurILDreg
- Informed consent
- Handheld spirometry substudy and Sniffphone
- Biometric data
- Medical history Baseline
- Patient Complaints and Physical examination
- Smoking history
- Comorbidity
- Family history
- ILD-related drugs and medical measures
- Environmental Exposure and Professional Activites
- Lung Function and Diffusion Capacity at Site
- Lung function - handheld spirometers measurements
- Gas exchange at rest & exercise and Sleep Evaluation
- LTOT and Ventilation
- Laboratory results
- Cardiac assessment
- Invasive diagnostic procedures
- Pathological pattern
- Radiographic pattern
- Clinical diagnosis
- MDT board diagnosis
- Medication
- Supportive therapy and immunisation
- Symptom survey
- Health care utilization
- Leicester Cough Questionnaire
- K-BILD Questionnaire
- EuroQol-5D-5L
- Biobanking
- Genetic analysis
- Survival status and Lung transplant
- Charlson Comorbidity Index
Name
Type
Description | Question | Decode (Coded Value)
Datatype
Alias
record_id
Item
Record ID
text
ic_datenrollment
Item
Date of enrollment
date
CL Item
Version 2.1 eurILDreg (1)
Item
Patient agreed to be recontacted for the purpose of obtaining additional information or biomaterials
integer
Code List
Patient agreed to be recontacted for the purpose of obtaining additional information or biomaterials
CL Item
Yes (1)
CL Item
No (0)
Item
Patient agreed to be recontacted for the purpose of obtaining informed consent for data transfer to other medical data warehouses
integer
Code List
Patient agreed to be recontacted for the purpose of obtaining informed consent for data transfer to other medical data warehouses
CL Item
Yes (1)
CL Item
No (0)
Item
Patient agreed to be recontacted in case scientific analysis forwarded relevant novel genetic information in the concerned family with ILD
integer
Code List
Patient agreed to be recontacted in case scientific analysis forwarded relevant novel genetic information in the concerned family with ILD
CL Item
Yes (1)
CL Item
No (0)
Item
Patient agreed to be recontacted if patient's participation in a clinical trial could be possible based on the existing data set
integer
Code List
Patient agreed to be recontacted if patient's participation in a clinical trial could be possible based on the existing data set
CL Item
Yes (1)
CL Item
No (0)
Item
Patient agreed that the data collected/results from data analyses may be forwarded to third parties in pseudonymised or anonymised form, incl. potentially forwarding data to partners in industry.
integer
Code List
Patient agreed that the data collected/results from data analyses may be forwarded to third parties in pseudonymised or anonymised form, incl. potentially forwarding data to partners in industry.
CL Item
Yes (1)
CL Item
No (0)
Item
Furthermore, I also consent to my biological samples and data being forwarded to countries outside of the EU, even if the European Commission has not adopted an adequacy decision and no agreements on data protection have been officially approved or adopted. The potential risks associated with this have been explained to me (item 6d on the information sheet).
integer
Code List
Furthermore, I also consent to my biological samples and data being forwarded to countries outside of the EU, even if the European Commission has not adopted an adequacy decision and no agreements on data protection have been officially approved or adopted. The potential risks associated with this have been explained to me (item 6d on the information sheet).
CL Item
Yes (1)
CL Item
No (0)
CL Item
Yes (1)
CL Item
No (0)
CL Item
Yes (1)
CL Item
No (0)
ic_ipfregid
Item
eurIPFreg ID
text
CL Item
Yes (1)
CL Item
No (0)
ic_eudractnumber
Item
EUDRA CT number or clinical.trials.gov entry number
text
ic_investigproduct
Item
Please specify the investigational product:
text
ic_eudractnumber_2
Item
EUDRA CT number or clinical.trials.gov entry number
text
ic_investigproduct_2
Item
Please specify the investigational product:
text