BTS launches its new BTS UK Interstitial Lung Disease Registry

The British Thoracic Society (BTS) is pleased to announce the launch of the new BTS UK Interstitial Lung Disease (ILD) Registry. Building on the existing BTS UK patient Registries, this new Registry has been developed to collect information about additional people diagnosed with ILD including those affected by specific interstitial lung conditions not included currently. Data is submitted by healthcare professionals and held in a secure database.

This new BTS UK ILD Registry will draw together the existing UK Idiopathic Pulmonary Fibrosis (IPF) and UK Sarcoidosis Registries, as well as expanding to include all fibrosing ILDs. This expansion of the Registry will support a greater understanding of how cases of fibrosing ILD are treated nationwide.

ILD is a term used for a large group of diseases that cause scarring (fibrosis) of the lungs. The scarring impacts normal lung size and function, including the ability to get oxygen into the body, which leads to breathlessness. The data collected by the Registry are therefore broad and include demographic data, diagnosis details, test results including lung function, treatment provision and long-term outcomes. Hospitals can also benchmark against key metrics such as patient wait times and whether patients were offered access to a specialist nurse or to support groups.

Collating data from a larger group of people across time helps to improve understanding of the broader ILD landscape. The creation of a more substantial knowledgebase gives a means of improving epidemiology and subsequently patient care. Patients suffering from, and clinicians treating, ILDs that have a lower prevalence see particular benefit from this collation of national data. This Registry helps to build greater equality in care by providing insight into rarer illnesses that otherwise would struggle to receive focus.

Andrew Wilson, Professor of Respiratory Medicine, and Chair of the BTS Registry Steering Group, said,
 
“It is very exciting to be able to extend the Registry to all people with pulmonary fibrosis. It means that we will be able to understand about the care given to people with these lung scarring conditions and how it helps them. We will be able to compare clinical practice throughout the country to improve patient care.”
 
Use of Registry data allows clinicians to reflect on their practice and compare the care patients are receiving across the UK, ensuring best practice is upheld. It is also a useful source of evidence for commissioners and researchers when working to determine the resources required in the health system to deliver high quality patient care for patients affected by ILD.

Steve Jones, Chair of Trustees for Action for Pulmonary Fibrosis, said,

“We warmly welcome the changes to the new BTS UK ILD Registry. Being diagnosed with any form of progressive lung fibrosis comes as a devastating blow, not only to the person with the disease, but to the whole family. We support the use of data from the registry to throw light on how practice affects care, quality of life and life expectancy across the UK. We want to accelerate the improvements in care and research, so no matter who you are or where you live, you have access to the very best care. We see the registry as playing an important part in our continued quest for improvement.”
 
For those who took part in the previous Registry, transitioning to the new version will be straightforward. All existing records will be migrated to the new database, so users can access and update patient records exactly as they did before.
 
BTS Chair, Dr Paul Walker, said,
 
“Interstitial lung disease is a common and important group of lung conditions that are often poorly recognised and understood. BTS members and others have already contributed to great advances in the diagnosis and management of ILD and this expanded Registry will provide further insight into UK ILD care. We believe the Registry will help to further drive quality improvement in ILD services and ultimately improve treatment and support available to people with ILD.”
 
To learn more about the BTS UK ILD Registry, download the BTS ILD Registry Annual Report 2021 summary or visit the British Thoracic Society website.