BTS ILD Registry Programme: IPF Registry Dr Lisa Spencer, Chair BTS ILD Registry Programme: IPF Registry December 2018

The BTS ILD Registry Purpose: To increase understanding of the distribution and natural history of ILD and facilitate research outputs by collaboration. Outcome: Lead to improvements in diagnosis, treatment and standards of care for patients. The BTS ILD Registry aims to provide an easily accessible, secure platform for the national collection of longitudinal demographics and clinical information data for patients over time. The Registry includes data for two ILD conditions in the first instance: Idiopathic Pulmonary Fibrosis (IPF) Sarcoidosis December 2018

Challenges in IPF IPF is an uncommon disease - ~32,000 patients in UK living with IPF – increasing however Difficult for single UK centres to accumulate an adequate patient population to provide robust epidemiological data or facilitate clinical research IPF-related hospital admissions - 9000 and 5,000 deaths per annum (~1% all UK deaths) IPF patients require access to a diverse number of services cutting across specialist - general respiratory - community boundaries December 2018

Participating Centres – December 2018 As of December 2018 the ILD Registry had 62 participating sites across the UK. All hospitals are invited to join, and BTS Head Office support sites to obtain local Caldicott approval. Uptake slow but steady – resources stretched Almost 2000 incident IPF cases now- large dataset over 5 yrs A list of all participating sites is available on the BTS website https://www.brit- thoracic.org.uk/standards-of-care/lung-disease-registries/bts-ild-registry/ December 2018

What are the site benefits to BTS ILD Registry contribution? Each hospital can generate its own summary reports and data displays at anytime. Sites are also provided with their local summaries vs. national data summaries as dashboards twice a year. Individual case summary reports can be generated for patients, used in clinic, give key information e.g. treatment history, date of MDT and sequential lung function results over time. Captured registry data enables audit against NICE CG163 (2013). Can help sites identify areas of best practice and areas that could benefit from further investment. The IPF Registry enables benchmarking against national NICE Quality Standards. December 2018

IPF: NICE Quality Standards (2015) Statement 1. People are diagnosed with IPF only with the consensus of an MDT with expertise in ILD Statement 2. People with IPF have an ILD specialist nurse available to them Statement 3. People with IPF have an assessment for home and ambulatory oxygen therapy at each follow-up appointment and before they leave hospital following an exacerbation of disease Statement 4. Pulmonary rehabilitation programmes provide services that are designed specifically for IPF Statement 5. People with IPF and their families and carers have access to services that meet their palliative care needs ILD MDT Spec Nurse input & access Oxygen Assessments PR Palliation

IPF Demographic Data Dashboard December 2018

IPF Clinical Information Data Dashboard December 2018

Future Developments – Increasing Uptake Discussions between the BTS ILD Registry and NHSE about specialised commissioning and the quality dashboard. Key points have included: The BTS IPF Registry will become mandatory for specialist centres only in the next update of the ILD specialised commissioning specification document. Feedback from the BTS ILD Registry Steering Group will be considered when redrafting the NHSE Specialised Service Quality Dashboard for ILD. We are working on options that may lead to adoption of registry onto CRN December 2018

Future Developments – Promoting Research The BTS Data Access Request Process is being finalised for .all BTS projects which involve analysing patient data. The ILD Registry is expected to open to data access requests .from researchers during 2019 (date to be confirmed). When launched, researchers will be able to apply to access .Registry data for the purpose of publishing original research. December 2018

Huge thanks to: ILD Registry Steering Group: Dr Huzaifa Adamali, Mr Howard Almond, Dr Nazia Chaudhuri, Dr Robina Coker, Dr Wendy Funston, Dr John Hutchinson, Mr Steve Jones, Mrs Sarah Lines, Dr Philip Molyneaux, Dr Lisa Nicol, Dr Katherine Spinks, Professor Monica Spiteri All participating sites (a full list is available on the BTS website). British Lung Foundation, Action Pulmonary Fibrosis and Sarcoidosis UK for helping us to keep patients’ interests at the heart of the Registry. BTS Head Office, including Maria Loughenbury and Sally Welham

For more details contact registry@brit-thoracic.org.uk Information for patients and copies of consent forms are available on the Registry website: https://www.brit-thoracic.org.uk/standards-of-care/lung-disease-registries/bts-ild-registry

BTS ILD Registry Key Updates NHSE are going to make BTS IPF registry participation mandatory in 2019 for specialist centres Opens possibility of clinicians asking trusts for help to fill registry……. BTS has been asked to propose a new set of national ILD quality dashboard data points for specialist centers to collect – current set drafted a long time ago – difficult to collect- work in progress Intend to propose datasets that will include NICE IPF quality standards IPF registry dataset if completed will collect dashboard data for centres and collect data against audit points laid out in NICE IPF CG163- audit and dashboard data collection for year done makes registry more clinically useful Get local and national data summaries can bench mark your service against national standards More on sarcoid registry in 2019