Irish Thoracic Society Interstitial Lung Disease Registry
The Irish Thoracic Society (ITS).
2016 (Pilot in three centres).
The main objective of the ILD Registry of Ireland is to provide for the relief of sickness, suffering, and distress, and to advance education by collecting and analysing information relating to interstitial lung disease in Ireland, which can be used to facilitate research and provide accurate reports in order to monitor and improve treatments which will contribute to the quality of care of persons with interstitial lung disease.
National.
The Registry is currently not actively collecting data due to the impact of COVID-19 but plans to resume collection in 2022 are underway and it will be for a three year period.
Identify, record, analyse, and store information relating to the prevalence, incidence, and treatment of interstitial lung disease (ILD) in the Republic of Ireland. This will allow us to provide data on the long term prognosis of ILD in the Republic of Ireland, and to compare this information with international data. We will particularly focus on Idiopathic Pulmonary Fibrosis (IPF) in view of recent and international developments in this disease.
Provide a framework on which to develop strategies in the evaluation of novel treatments in ILD and facilitate treatment of these patients in a fair and appropriate manner.
Promote and facilitate the use of clinical data in approved research projects, relating to the causes, distribution, treatment, and outcome of ILD in the Republic of Ireland
Enhance and develop important dialogue and information streams to the Health Service Executive in Ireland that will assist in the planning and management of health services and essential resources for ILD in Ireland.
Healthcare professionals, HSE, policymakers, patient representative charity, researchers.
Patient demographics, diagnostic procedures performed, treatment and outcomes.
Not available.
No.
Gender, ethnicity, country of birth, country of residence.
Data is inputted to the registry via a standard web browser. Data is stored in a central system which can be accessed by the ITS only.
Data is collected monthly.
Not applicable.
It is expected that an average of 200 cases will be recorded annually.
It is planned at a minimum to publish data in the form of an annual report.
By application to the Irish Thoracic Society ILD oversight committee which is composed of members of the ITS and lay members both medical and non medical.
No.
The Registry was developed in 2014/2015 and the first data was inputted on a pilot basis from 3 centres in 2016. This was subsequently extended to 5 centres.
There was an Annual Report in 2018.
https://irishthoracicsociety.com/wp-content/uploads/2018/11/ITS-ILD-Registry-Annual-Report-2018.pdf
The Registry is currently not actively collecting data due to the impact of COVID-19 but plans to resume collection in 2022 are underway.