Irish Unrelated Bone Marrow Registry (IUBMR)
The Irish Thoracic Society
2016 — pilot in three centres.
The main objective of the Interstitial Lung Disease (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.
Identify, record, analyse, and store information relating to the prevalence, incidence, and treatment of 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 HSE in Ireland that will assist in the planning and management of health services and essential resources for ILD in Ireland.
Patient demographics, diagnostic procedures performed, treatment and outcomes.
Currently the following centres: Galway University Hospital, Cork University Hospital, Tallaght Hospital, Limerick University Hospital. St Vincent’s University Hospital and Mater Misericordiae University Hospital Dublin will commence data input in 2017.
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.
Not available
Not applicable.
It is expected that 200 records will be created on average 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 three centres in 2016.