Live: Multi-centre clinical research study
Collect, manage and analyse data for patients with Juvenile Idiopathic Arthritis (JIA)
CAPTURE-JIA is a standardised core dataset for Juvenile IdiopathicArthritis (JIA) that includes items reported by both patients and clinicians.The aim of the Capture-JIA programme is to collect information at each patient hospital visit across the UK, and use this data to inform a national audit programme and related research projects to drive improvement in services and improve disease outcomes in JIA.
The dataset and data dictionary development are complete and published in Rheumatology https://doi.org/10.1093/rheumatology/kez214. A six-centre pilot demonstrated that paper collection of the CAPTURE-JIA data items is feasible in the routine clinical setting, but unlikely to be sustainable in the longer term. An electronic tool which sits in the clinical domain, ideally interlocking with local systems, will enable more complete data collection in a less time-consuming fashion with many advantages offered by digitising data collection.
The study group has been working with Appligo to configure an electronic data collection and sharing solution using their Agileware platform. Agileware can be accessed in the consulting room, enabling complete data recording, essential for service delivery evaluation and clinical research. Captured data is then made available in real time to the University of Manchester for analysis and derivation of meaningful outcomes without delay or further transcription.
“The fact that the Agileware is so flexible and can be configured without specialist skills means that wehave been able to quickly iterate and adjust the solution in response tofeedback from clinical teams, using non-technical resources. We now have acustomised, electronic solution without the traditional cost or bottlenecks of IT which means we can focus on implementing the knowledge acquired during our research study faster than ever before”
- Dr Flora McErlane, Consultant Paediatric Rheumatologist, Great North Children’s Hospital, Newcastle
In addition to exploring the feasibility of collecting clinical data during a routine patient encounter, a patient feedback questionnaire will explore families preferred collection method for patient reported data items and a parallel project at University of Manchester will explore whether data collected at multiple time points can be extracted and analysed meaningfully.
“I have found the platform easy to use and smooth and it is fantastic to be recruiting patients and collecting data!”
- Dr Gavin Cleary, Consultant Paediatric Rheumatologist, Alder Hey Children’s Hospital
Agileware is a platform, rather than a single-use system. If you have a need to capture clinical, research or operational information across multiple centres and share that with each other or a central team, then Agileware will probably be able to help you replace all of those existing spreadsheets and databases currently being used and instead provide a single, governed system.