APF attends the Interstitial Lung Disease (ILD) Registry Steering Group meeting at the BTS Conference
Action for Pulmonary Fibrosis were delighted to be invited by the British Thoracic Society (BTS) this week to take part in the Interstitial Lung Disease (ILD) Registry Steering Group meeting.
The Registry provides a means of national data collection encompassing two disease areas: Idiopathic Pulmonary Fibrosis (IPF) and Sarcoidosis.
A primary aim of the registry is to help estimate the numbers living with IPF and by collecting data about their care, ensure they are receiving the NICE Standards of Care, as set out for those living with IPF, which are laid out below:
1. People are diagnosed with idiopathic pulmonary fibrosis only with the consensus of a multidisciplinary team with expertise in interstitial lung disease.
2. People with idiopathic pulmonary fibrosis have an interstitial lung disease specialist nurse available to them.
3. People with idiopathic pulmonary fibrosis have an assessment for home and ambulatory oxygen therapy at each follow up appointment and before they leave hospital following an exacerbation of the disease.
4. Pulmonary rehabilitation programmes provide services that are designed specifically for idiopathic pulmonary fibrosis.
5. People with idiopathic pulmonary fibrosis and their families and carers have access to services that meet their palliative care needs.
Another key aim is that through data collection on the registry, it will help facilitate future research.
Action for Pulmonary Fibrosis’ Senior Operations Manager Roxane Caplan, who attended the event, said
We were pleased to be at the steering group meeting to represent IPF patient interests. I’m sure it will interest both our health professional and patient communities that we are involved in this committee and we hope to promote uptake by informing patients about it, so they can ask their clinicians if they can contribute data to it.