Why was the database created?
Care purpose (enabling the care and follow-up of patients).
What data does the database contain?
- Population of interest
- Patients with ILD followed by a pulmonologist using Colibri-Pneumo.
- Main inclusion criteria
- Patient with an ILD diagnosed by their pulmonologist: patient informed of their inclusion in the Colibri-Pneumo database for research and who has not objected to appearing in this database.
- Age group
- Older adult (65 and over) Adult (18 to 64)
- Data category
- Identification data (not directly identifying) Medical imaging Lifestyle data Directly identifying data Quality of life Socio-professional data Treatments Family history Biological data Clinical data
- Data collection methods
- Patient record Patient questionnaires
How is the data managed?
- Data retention period
- 10 years after the last visit with the pulmonologist.
- Database documentation
Why is the database legal?
- Data controller
- aCCPP
- Legal basis
- This database is set up on the basis of the legitimate interest of the ACCPP in conducting scientific research in the field of pulmonology (Articles 6(1)(f), 9(2)(j) and 89 of the General Data Protection Regulation (EU) No 2016/674).
- Data quality and completion
- Data are entered by the physician during the consultation. No field is mandatory, there is no data management. However, self-check criteria are regularly offered to the physician to encourage them to complete their data. Regular analyses show completeness above 80% for all essential criteria (anthropometric data, comorbidities, environmental exposures, chest CT scan, respiratory function, symptoms). For additional criteria (e.g. laboratory data, exercise tests, etc.), completeness varies.
- Data transfer outside the EU
- There is no transfer outside the EU.