We recognise that people with Axial Spondyloarthritis (axSpA) 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 quality of life and wellbeing. Introducing…the ‘Nightingale’ study.
What is it?
The Nightingale study is designed to empower people with axSpA 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!
Project Nightingale’s study is now live! If you’ve not already downloaded the App and would like to take part please enter your email address below to get involved. It is important to note that currently, unfortunately participation in Project Nightingale is only available for patients with axSpA at the Royal National Hospital for Rheumatic Disease in Bath, or for people who have attended a clinical appointment here. If you have any queries about this, please email firstname.lastname@example.org .
How will the data be used?
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. Importantly, this project is ongoing, so the longer you can log for the better – there is currently no end date for data entry! 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 Axial Spondyloarthritis.
Help with project nightingale
If you would be interested in joining a focus group to seek help and assistance using the app, discuss the benefits with others and understand a little more about the project then please contact email@example.com to register your interest. The more interest we get, the more likely we’ll be able to put something on to help.
Frequently asked questions
Do I have to own a fitness device or fitness app to participate? No, not at all. Any data that we can gather will prove useful so please do participate even if you do not have access to a fitness app or device.
Which apps or devices are compatible with the UMotif app? Although you don’t have to synchronise an app or device, there are many that are compatible should you wish.Do I need to use the app regularly?
Yes, please. We’re hoping for a 3-month trial with as much data as possible so please complete daily.
Do I need to add my information at the same time each day? Ideally yes so that we can see an patterns. If you’d like to complete the motif retrospectively you can change the time of the entry during the update stage at the bottom of the page.
Will I be reminded to complete the app? Yes reminders sent daily at 1830.
If I’m tracking the affect of my menstrual cycle, how can I capture where in my cycle I am? Please use the daily diary to capture this information.
If you have any general questions about the study please email us at firstname.lastname@example.org and we’ll be happy to help in any way we can.