March 2021 Research Updates
Good morning everyone!
Happy Sunday! We hope that you are keeping well and having an okay week, despite the grim weather. Not long to go now until hopefully a bit of a break over Easter weekend.
Some Project Nightingale updates for March...
Project Nightingale - Participants
As of today, 28th March 2021, we have 366 participants registered with the uMotif Project Nightingale app. This is incredible - thank you so much to all of you who are taking part and logging your symptoms daily! This project is helping us to build a unique, novel daily self-report dataset of people with axial spondyloarthritis (axSpA), and we have already gained some extremely interesting, unique insights regarding flare using the data. However, there is so much more to learn/ be uncovered! Such an exciting opportunity for axSpA research - thank you all again.
Project Nightingale - What have we learnt so far?
So far, we have mainly focussed on trying to characterise flare, and understand how symptom patterns may vary for different people. We are now working with the Institute for Mathematical Innovation in Bath to apply for funding to study this in more detail - to potentially see if we can use the dataset to predict when flare is going to occur. Gaining a better understanding of flare will hopefully, in future, allow us to better understand how to reduce the frequency and intensity of flares. Therefore, to ultimately hopefully improve people's quality of life. You can check out our current publications via the "Publications" tab above - including a couple of conference abstracts/ posters. However, until the rest of our flare characterisation work is published, we unfortunately cannot go into too much detail regarding the results. However, our PhD student Rosie recently did a talk for the National Axial Spondyloarthritis Society where she discusses some of our results regarding flare characterisation: https://www.youtube.com/watch?v=I0kHN88PPRo. As soon as our work is published, Rosie will let you all know via the "Publications" tab and via her twitter @RosieBarnett95.
New publication submissions
This month, we have also submitted another manuscript using the Project Nightingale cohort data - looking at chronic widespread pain in axSpA. If you read last months blog post, you will also be aware that we submitted another manuscript last month looking at flare characterisation. So fingers crossed, we should hopefully be able to share these papers with you soon! Although, as mentioned last week, the review processes can be quite long and we may have to submit to a few places before being accepted (some of the joys of academia!).
Only this week, we also submitted an abstract to the International Congress of Spondyloarthritides (https://spa-congress.org/home) - comparing flare patterns in radiographic (ankylosing spondylitis - AS) versus non-radiographic axSpA. See our previous blog post if you want to know more about the distinction between radiographic (AS) or non-radiographic axSpA: https://www.projectnightingale.org/blogs/axial-spondyloarthritis-what-is-axspa-and-how-does-it-relate-to-ankylosing-spondylitis/. If this abstract is accepted, we will hopefully be able to share our work on an international scale at the 2021 conference in Belgium.
Project Nightingale - New Research Assistant
Excitingly, our new Project Nightingale research assistant is now due to start mid-April hopefully. So not long to go until we can introduce them via the blog! We are so excited to begin expanding our work on Project Nightingale, and to watch the team grow. Thank you all for your support! And to the Sir Halley Stewart Trust for funding this particular role.
Other research you can get involved with
Physical activity and axSpA survey study
One of our colleagues within the Bath Spondyloarthritis Research Consortium, Thomas Ingram, is currently studying physical activity in axSpA - to try to understand how we can help people improve their motivation to remain active. Which we all know is a critical part of managing the condition. Thomas is currently running an online survey (estimated to take ~30 minutes) and would be very grateful to anyone who can take part. You can access the survey here: https://bathreg.onlinesurveys.ac.uk/pa-experiences-of-living-with-axspa. This work will contribute towards his PhD thesis.
COVID-19 impact survey
Some of you may have also heard of the international "REUMAVID" study - investigating the consequences of the COVID-19 pandemic on people living with rheumatic conditions in the United Kingdom. The first phase of the REUMAVID study took place between April-July 2020 and over 1,800 people took part. The results are very important (see image below). Over 1 in 4 people surveyed went out for a walk just one day per week or less during the first phase of the pandemic. And 11% reported no contact at all with the outside world. Getting outside and staying connected are so, so important for our mental health. The second phase of the study is now live where you can have your say. The results will help to design solutions that will help improve the well-being and quality of life of people living with rheumatic diseases once this current pandemic is over, or in the event it extends for a longer period of time. You can access the survey here: https://es.surveymonkey.com/r/REUMAVID-UK-Phase2. It is estimated to take ~15-20 minutes to complete.
Finally, before we sign off on this blog post, here is the upcoming schedule of National Axial Spondyloarthritis Society (NASS) Facebook live events! You can check out a list of their past events also either on our website "Events" page, or you can browse their website My AS My Life (https://nass.co.uk/managing-my-as/my-as-my-life/), Facebook (https://www.facebook.com/NationalAxialSpondyloarthritisSociety/live), or the NASS YouTube channel (https://www.youtube.com/channel/UCBBEzT1MrYyLe_TWQ17Rz1g).
14 April 1300: Weight management with Martin Lau, Dietician and Fitness Instructor, Arthritis Action
21 April 1300: Hypnotherapy and relaxation with Lara Wiseman, Hypnotherapist and Life Coach
28 April 1300: Osteoporosis - what is it and how is it treated? with Sarah Leyland, Royal Osteoporosis Society Clinical Advisor
A final thank you!
If you made it this far, thank you so much for reading! Have a lovely rest of the weekend.
Take care and all the best,
The Project Nightingale Team