Safe People
Lead applicant organisation name	University Hospital Birmingham

Safe Projects
Project title	DETERminants of progressive fibrosis and poor health outcomes in Interstitial Lung Disease (DETER-ILD)
Lay summary	"The term “Interstitial lung disease (ILD)” describes a number of disorders that affect primarily the parenchyma (or interstitium) of the lung - the mass of spongy, air-filled lung tissue, where exchange of oxygen and carbon dioxide takes place; the term includes diseases such as sarcoidosis, hypersensitivity pneumonitis and idiopathic pulmonary fibrosis (IPF). Progressive lung fibrosis, clinical deterioration over 3-4 years, major complication, and early death are all well described in IPF, where antifibrotic treatments are now available to improve these adverse outcomes. The natural histories of the other ILDs, where reversible inflammation and both stable and progressive disease are seen, are not as well described. Furthermore, it may be helpful to identify common pathways between diseases, irrespective of the underlying pathology, in order to target existing antifibrotics and new treatments. Risk factors for progressive fibrosis in ILD are unknown for many of the diseases. University Hospitals Birmingham NHS Foundation Trust hosts an NHS England commissioned specialised ILD service across 5 hospital sites in Birmingham UK. The researchers intend to undertake a retrospective, observational study using existing data from the ILD service clinical databases. They aim to measure health outcomes (mortality, hospitalisation, complications) and employment status in patients with ILD; they then wish to examine baseline cross-sectional data to determine the risk factors for progressive disease and other poor outcomes. "
Public benefit statement	"DETER-ILD benefits patients and ILD services by addressing key research priorities, including early diagnosis accuracy and the impact of early treatment on survival and quality of life. This study provides retrospective ‘real-world’ data from a large ILD service to answer unanswered questions and guide future research. DETER-ILD is all-encompassing, including all patients reviewed at the UHB ILD service over the past 10 years, offering a true representation of ILD patients. The diverse population served by UHB NHS Foundation Trust ensures findings are generalizable across the UK. Researchers anticipate results will help clinicians make difficult decisions in ILD management where no standard of care exists. The data may also help determine bio-physiological markers, prediction rules, and composite outcomes for future studies. Additionally, it may highlight new therapeutic priorities. Directly, findings could inform patient management, treatment decisions, and ILD service delivery in the coming years."
Latest approval date	27/10/2023

Safe Data
Dataset(s) name	PATHWAY Research Data Hub: PWY004 dataset

Safe Setting
Access type	Data released via Letter of Authorisation. All researchers have received training in the care, use and protection of personal data, enabling them to comply with their responsibilities under the Data Protection Act.

Safe Outputs
Link	Not yet Published