AVERT Project Patient Engagement Reports 2020
In people with autoimmune disease, the immune system is incorrectly activated so that, rather than deploying its weaponry to remove an infection, it causes organ destruction. An individual’s susceptibility to autoimmune disease is partly mediated by their genetic make-up, but the trigger is something in the individual’s environment. The triggers for a specific autoimmune disease are generally unknown. If we can discover what these are, we will be able to predict autoimmune disease risk and potentially devise ways in which the trigger can be avoided.
In most causes of autoimmune disease, where the body’s immune system attacks an individual’s own body, the condition flares repeatedly over time. For example, in ANCA vasculitis, half of sufferers have a flare within 5 years. This requires use of powerful medications, which cause infection by suppressing the immune system.
We bring together physician, patient, computer scientist and artificial intelligence expertise to create a system that learns over time about the impact of the environment on disease flare, with the goal of creating a clinical support tool and an intelligent smartphone app that will empower the patient in managing their own condition.
Republic of Ireland country wide map of the standardised incidence rate (SIR) of anti-glomerular basement membrane disease between 2003 and 2014 (Clin J Am Soc Nephrol. 2016 Aug 8;11(8):1392-9. doi: 10.2215/CJN).
How do I participate?
Sharing your data to improve health outcomes
We are very keen to recruit people with ANCA vasculitis from all over the world. We have created an app that provides support to people living with vasculitis through medication reminders, tips and advice, activity and physiological measurement tracking, and symptom recording. This also serves to provide information to our research group about how vasculitis is affecting you.
We are most interested in how you feel should you suffer a flare of the disease: through the app, we can then study what factors in your environment may have triggered that flare. These factors include local weather patterns, pollution and infections.
Please join us in our goal of uncovering the triggers of autoimmunity:
Step 1: Download the app: onelink.to/p6pyja .
Step 2: Consent to use of the app. Enter your information, including details about the type of vasculitis you have.
Step 3: Consent to joining the AVERT study
Step 4: If already a recruit of the Irish Rare Kidney Disease registry, consent to linkage to this registry.
Key study personnel
|Principal Investigator||Prof Mark Little|
|Lead Study Nurse||Ms Jane Richardson; firstname.lastname@example.org|
|ADAPT Semantic Web Team||Prof Lucy Hederman|
|Prof Declan O’Sullivan|
|ADAPT Machine Learning Team||Dr John Kelleher|
|TCD Statistics Team||Dr Jason Wyse|
|Dr Arthur White|
|Mr Daniel Dempsey, PhD student|
|Dr Jennifer Scott, ICAT Fellow|
|Environmental Engineering Team||Dr John Gallagher|
|Dr Aoife Donnelly|
|Patient Representative||Ms Julie Power, Vasculitis Ireland Awareness|