We recognise that Ankylosing Spondylitis (AS) patients may only have a 15-minute appointment when they visit the hospital for their check-up. These meetings are likely to focus on medication and trying to prevent the condition from progressing, rather than a patient’s quality of life and wellbeing.
Introducing…the ‘Nightingale’ study.
What is it?
The Nightingale study is designed to empower AS patients to take control of their symptoms and improve their quality of life. Not only will the data gathered help consultants to help patients manage their condition, but they will be able to see their own ‘real time’ data on factors that may influence these symptoms, allowing a level of self-management.
How does it work?
It’s simple – join the study via the uMotif app and record a few bits of information each day to track your symptoms and movement. If you have a wearable device (like a FitBit/Apple Watch), the app will connect with it and automatically track sleep and exercise data.
Currently, data recorded relating specifically to a patient’s quality of life – i.e. work, sleep, exercise and flares, is poorly recorded and can be subjective and prone to recall bias (a patient trying to remember how their sleep has been affected over the last year, how many flares they have had etc.) This app makes it easy!
Want to be involved?
If you think this sounds great and want to be part of the Nightingale community, please enter your email address below and we will be in touch as the app gets closer to launch:
What does this mean for AS patients?
The data gathered in the Nightingale study can be used to help predict flares, adopt regular exercise programs and improve sleep, optimising a patient’s clinical consultation by addressing issues important to them. The data could also be used to help understand the benefits, or lack of, from any new treatments started.
Please note: Only your consultant will be able to see individual-level data. However, by taking part, all data will be made anonymous to be used for research to help others with Ankylosing Spondylitis.