Homerton Interstitial Lung Disease Clinical Registry
Research type
Research Study
Full title
Homerton Interstitial Lung Disease Clinical Registry
IRAS ID
368331
Contact name
Jack Callum
Contact email
Sponsor organisation
Homerton Healthcare NHS Trust
Duration of Study in the UK
9 years, 10 months, 0 days
Research summary
Interstitial lung diseases (ILDs) are chronic pulmonary conditions related to either scarring or inflammation of the lung parenchyma which cause profound breathlessness, cough, respiratory failure and often systemic complications such as right sided heart failure. We are creating a secure ILD registry at Homerton Healthcare to bring together key information already recorded during routine care.
The registry will include adults with ILD who have been cared for at the Homerton and will include demographics, diagnostics, lung function testing, radiology, relevant blood tests, treatment history and echocardiogram findings. Data will be collected both retrospectively and prospectively for patients seen in future clinics.
The project involves no additional tests and no changes to clinical care. The only identifiers retained are NHS number, MRN and date of both which are needed to accurately link information across hospital systems before the dataset is pseudonymised for analysis. Patient names will not be stored.
We will apply the NHS National Data Opt-Out and will seek support under the NHS Act 2006 via the Confidentiality Advisory Group as it is not feasible to obtain consent for every patient who has previously been cared for at the Homerton Hospital with ILD.
The registry will enable high-quality research into ILD patterns, outcomes, and treatment use in routine practice, supporting service improvement and future ethically-approved studies that use pseudonymised data.
REC name
Wales REC 6
REC reference
26/WA/0103
Date of REC Opinion
7 Apr 2026
REC opinion
Favourable Opinion