Launching Irish Thoracic Society ILD Disease Registry

OpenApp was delighted and proud to attend the launch of the Irish Lung Fibrosis Registry (ILD Registry). OpenApp have worked with the Irish Thoracic Society to deliver a customized patient registry built on our Clinical Insight patient registry software. The launch was held in the fitting setting of Dun’s library in The Royal College of Physicians Ireland which contains over 20,000 medical volumes, some dating from the 16th century.

The patient registry and position statement launched by the Irish Thoracic Society are intended to increase knowledge and improve patient care in Ireland, including understanding the prevalence and outcomes of Interstitial Lung Disease (ILD) and Idiopathic Pulmonary Fibrosis (IPF) in Ireland.

Increasing Knowledge of Idiopathic Pulmonary Fibrosis (IPF)

Idiopathic pulmonary fibrosis (IPF), more commonly known as lung fibrosis, is a chronic disease that leads to the development of scar tissue (fibrosis) in the lungs.  Idiopathic Pulmonary Fibrosis (IPF) is the most common type of Interstitial Lung Disease (ILD) and more commonly known as lung fibrosis.  There is no known cause and the condition is terminal. Life expectancy from the time of diagnosis is usually between two and five years.

Around 1,000 people in Ireland are living with the condition, and some 400 new cases are diagnosed every year. Evidence suggests that death rates for IPF in Ireland are above the EU average.

Minister Catherine Byrne spoke passionately for the launch of this rare and chronic disease registry, highlighting how the registry will increase research for patients benefit. Also speaking were Dr Ross Morgan and Professor Anthony O’Regan who also spoke to the launch of the position statement. Prof O'Regan insisted that it is ‘incumbent on the health service to act urgently' to resource all centres of expertise in lung fibrosis to the required standards. Gathered within the room were over 50 supporters of the registry launch including Professor Ed McKone, former Director of the European Cystic Fibrosis Society Patient Registry, patient advocates, clinical leads, clinical nurse specialists and physiotherapists.

Real-world Reusable Data For Research & Improving Care

OpenApp worked closely with the Irish Thoracic Society to develop the ILD registry to meet their patient registry and research needs in particular to enables clinicians and researchers capture high quality, reusable data to improve research, assist with quality care pathway design, and to assist research for a cure.

Registry Data Collection Methodology and Governance

The patient registry enables secure data collection from eight specialist HSE respiratory clinics in Ireland across hospital groups in Cork, Galway, Limerick and Dublin.

"Patients give written informed consent at the hospital site and the consent record is maintained at that site. After informed consent, basic patient data relating to ILD is recorded in the registry. Data is pseudonymized in the registry with no identifiers related to clinical care. At each hospital site, the site principal investigator can view clinical and longitudinal  information for each patient under their care.

All systems and processes are in line with the highest standards of data protection and reviewed on an on-going basis in line with evolving regulatory compliance requirements including GDPR. All data will be treated as confidential. No identifiable data will be issued to third parties. No participant will be identified in any presentations or publications of data arising from analysis of the registry."  ITS ILD Registry Annual Report 2018

Thereafter the ITS LD records the incidence of and clinical data on patients with IPF.   The Interstitial Lung Diseases Registry is one of a number of voluntary patient registers which provides valuable information, Others include the Cystic Fibrosis Registry.

Congratulations to the Irish Thoracic Society, in particular Prof Anthony O’Regan and Suzanne McCormack for your continuous commitment and endeavor to deliver the patient registry which will be a valuable resource for years to come.

Learn more about Working With Patient Registry Data

• Irish Thoracic Society's Key Finding from 2018 Patient Registry Report
• Learn more about OpenApp Patient Registries
• Using disease registries and other health data for palliative and end of life care research in Ireland: potential and challenges HRB Open Research, Kelly M, O'Brien KM and Hannigan A  (For example page 8 notes data from the ITS ILD Registry on referral paths, lung transplant assessment and palliative care.)
• The Times - ‘Cinderella’ of lung disease needs support, say doctors