Characterising healthcare resource utilisation for UK PAH patients v1
Research type
Research Study
Full title
Pulmonary arterial hypertension in the UK: characterisation of the healthcare resource burden through linked registry analysis
IRAS ID
341212
Contact name
Will Browne
Contact email
Sponsor organisation
Carnall Farrar Ltd.
Duration of Study in the UK
0 years, 0 months, 30 days
Research summary
Pulmonary arterial hypertension (PAH) is a rare and progressive disease which affects approximately 4,000 people across the UK. PAH disease severity can be defined using the World Health Organisation functional class (WHO FC) system, which stratifies on the basis of symptom severity and impact on day-to-day activities. The diagnostic challenges associated with PAH combined with the progressive and debilitating nature of the disease impose a significant healthcare resource burden, requiring intensive clinical input from multiple specialist teams.
Cambridge University Hospitals NHS Foundation Trust and The University of Cambridge are the joint data controller for the UK National Cohort Study of Idiopathic Pulmonary Arterial Hypertension (IPAH) and Heritable Pulmonary Arterial Hypertension (HPAH) Interlinked study. This registry includes data from approximately 900 adult patients in all the various specialist centres in the UK.
This study aims to link registry data, which captures diagnosis and disease severity information (WHO FC and risk status), with pseudonymised NHS Hospital Episode Statistics (HES) data to evaluate the impact of PAH severity and disease progression on HCRU. Understanding this data should increase the ability to identify the impact of PAH therapeutics and earlier diagnostics on the overall healthcare system. It should also help identify the specialities currently managing PAH patients, and the distribution of treatment between settings for each WHO FC and risk category, which could help to optimise the standard of care and support the UK reimbursement process.
This research uses a non-interventional, retrospective longitudinal design to analyse existing patient-level pseudonymised data from an established National Cohort registry across nine centres. This study will rely on the comprehensive data available, capturing real-world patient secondary care activities without altering current diagnostic or treatment journeys.
REC name
North of Scotland Research Ethics Committee 2
REC reference
24/NS/0030
Date of REC Opinion
19 Mar 2024
REC opinion
Favourable Opinion