British Axial Spondyloarthritis Inception Cohort (BAxSIC): Driving Innovation and Empowering Research Participation in the NHS across the UK
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All Authors
Marzo-Ortega, Helena
Alieva, Sayyora
Guerra, Onorina
Harrison, Stephanie
Weddell, Jake
LTHT Author
Marzo-Ortega, Helena
Alieva, Sayyora
Guerra, Onorina
Harrison, Stephanie
Weddell, Jake
Alieva, Sayyora
Guerra, Onorina
Harrison, Stephanie
Weddell, Jake
LTHT Department
Rheumatology
Research & Innovation
Research & Innovation
Non Medic
Senior Clinical Trial Assistant
Clinical Trials Coordinator
Clinical Trials Coordinator
Publication Date
2025-07-10
Item Type
Conference Abstract
Language
en
Subject
Subject Headings
axial spondyloarthritis
diagnostic delay
cohort study
diagnostic delay
cohort study
Abstract
Background:
Axial spondyloarthritis (axSpA) is a chronic, disabling arthritis affecting young people. AxSpA remains underdiagnosed and undertreated, with diagnostic delays of 8.5 years affecting long-term outcomes. BAxSIC was set up in collaboration with BRITSpA and (NASS) (1) to address this unmet need.
Aims:
To provide real-world data on the impact of diagnostic delay in disease progression, work participation, and functional outcomes in axSpA.
Methods:
Multi-centre, observational, prospective inception cohort study of people with axSpA within 6 months of a confirmed diagnosis. Participants undergo in-person assessments at baseline and 24 months, with remote data collection at 6, 12, 18, 30, and 36 months using an innovative, low-burden virtual follow-up system integrating electronic health records and patient-reported outcomes via a dedicated REDCap platform.
Results:
Since June 2023, BAxSIC has expanded to 27 sites, enrolling 260 participants towards its 500 target. First results are expected in 2026, with no interim analysis planned.
Showing remarkable flexibility, BAxSIC engages all size research teams across the UK despite limited funding. Participating patients and sites praise the ease of use of the online platform, convenience of remote consent and short 10-15 min online visits, reducing hospital appointments, whilst providing research teams real time access to clinically relevant data.
Challenges include a 5 year set up delay with loss of funding and slow uptake of innovative and remote methods for clinical research after the COVID‐19 pandemic. At LTHT, BAxSIC led to the adoption of REDCap and creation of a dedicated research cloud.
Conclusion:
Data from BAxSIC will enhance early detection and optimise long-term management of axSpA. BAxSIC exemplifies LTHT priorities by driving innovation, expanding research participation, and fostering collaboration across NHS Trusts, academic institutions, and patient organisations to address key challenges in axSpA. Its patient-centred approach and digital innovation model leverages NHS infrastructure addressing inequities in research delivery capabilities and setting a precedent for future large-scale NHS research initiatives, ultimately improving patient outcomes and healthcare efficiency.