New Research project launched March 2018

Developing a prediction tool for flares, using information from new Vasculitis patient app and existing meteorological data

This is a new research project being led by Prof Mark Little and Prof Alan Salama, both eminent consultants in the world of Vasculitis. The project is being funded by HRB and MRCG here in Ireland. It is a five year project which will use information gathered by a smartphone/tablet app (patientMpower)to determine which lifestyle and environmental factors trigger a flare. The information stored and entered into this app by the patient will include medication, health data (BP, Blood results etc), activity levels, exposure to environmental changes (pollution, viruses etc). Gathering this information will be three fold, it will provide evidence for the research, improve patient/physician interactions and act as a means of immediate feedback on what keeps us well.

For more information visit the website http://www.tcd.ie/medicine/thkc/avert/index.php/

 

 

 

The Patient Buddy App is downloadable for iPhone, Android phones, iPads, and laptops from the app store. This app has been co designed by PatientMpower, clinicians, and Vasculitis patients from Ireland and UK. The idea is that we can have a portable record of our medicines, medical well being (BP, weight, symptoms, etc), appointments, daily activity, and details of environmental changes can be recorded using the GPS system. The app is a useful tool to help us monitor our medications, well being and keep a ready record of health for the different appointments we have. It has also proved useful for some benefit assessments as a record of daily well being. When used regularly, it is hoped that over time we will be able to see patterns of behaviour that lead up to flares.

For more information visit https://info.patientmpower.com/

Information from the app can be used in the above mentioned AVERT project.

 

 

 

Rare Kidney Disease and Vasculitis

If you would like to get involved in the research currently taking place in Ireland then please visit http://www.medicine.tcd.ie/thkc/research/ or check out the newsletter below for more information…

If you would like to be contacted regarding this research then please fill out this form and someone will be in touch.

RKD-Newsletter-Spring-2018

 

 

RKD-biobank-flyer---June-'14

 

Other Research in Vasculitis

Vasculitis UK fund vital research projects  https://www.vasculitis.org.uk/research/funded-research

For current information on current Clinical trials taking place in your country visit

https://clinicaltrials.gov/

Other useful sites are the European Vasculitis Study Group -EUVAS  www.vasculitis.org   

Vasculitis Clinical Research Consortium – VCRC  https://www.rarediseasesnetwork.org 

We are now involved in UKIVAS (UK and Ireland Vasculitis) meetings and will try to keep you updated on latest developments.