Opportunity for Carers, family members and friends to participate in Vasculitis Research Project

About this Research:
We are currently recruiting healthy individuals to take part in a PhD study that investigates the effects of ageing on immune responses in the context of autoimmunity. As we get older our immune systems change and may begin to respond differently to certain threats. This study specifically focuses on the role of ageing in ANCA associated vasculitis (AAV), an autoimmune disease that results in inflammation of the small blood vessels and surrounding organs. Interestingly, unlike many autoimmune conditions, AAV tends to present later in life but why this is remains unclear. With this study we will be investigating various immune cell functions with age in response to stimulation with known drivers of AAV development. 
 
Importance of this Research:
Although increased age is a well established and important risk factor for the development of AAV, the biological factors accompanying age that may be driving this remain understudied. This research will help us to understand the underlying causes of vasculitis and therefore may help to guide future research into novel treatments and therapeutic approaches.
 
What is involved and where:
We are asking for a blood donation from healthy volunteers (no history of cancer, heart disease, diabetes, chronic infection, autoimmunity or frailty) over the age of 60 years old. This is a Trinity College Dublin led research project and so all volunteers will be asked to make their way to the Trinity Centre for Health Sciences Campus (TTMI) located on the St. James’ Hospital grounds in Dublin 8, where all participants will be asked to fill out a consent form and a blood sample will be taken. Fasting is not necessary for this sampling. 
 
This study is part of the Rare Kidney Disease registry and biobank and so, if consented, a blood sample may also be stored for downstream use. 
 
Contact information:
For more information please email Isabella Batten at batteni@tcd.ie  

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 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/

Or contact Jennifer Scott at JESCOTT@tcd.ie

or the research nurse at RKDResearchNurse@tcd.ie

Link to VINE (Local clinic options in Republic of Ireland):

https://www.tcd.ie/medicine/thkc/vasculitis/

Link to AVERT study information:

https://www.tcd.ie/medicine/thkc/avert/

Link to patientMpower app:

iOS (iPhone, Apple)

https://apps.apple.com/ie/app/patientmpower/id1077787395

Google play (Android):

https://play.google.com/store/apps/details?id=com.maithu.transplantbuddy&hl=en_IE

AVERT Patient Engagement Reports

 

https://www.tcd.ie/medicine/thkc/avert/march-2020/index.html

https://www.tcd.ie/medicine/thkc/avert/april-2020/index.html

https://www.tcd.ie/medicine/thkc/avert/may-2020/index.html

https://www.tcd.ie/medicine/thkc/assets/pdf/june-2020avert-patient-engagement-report.pdf

https://www.tcd.ie/medicine/thkc/avert/july-2020/index.html

https://www.tcd.ie/medicine/thkc/avert/august-2020/index.html

https://www.tcd.ie/medicine/thkc/avert/september-2020/index%20(2).html

https://www.tcd.ie/medicine/thkc/avert/october-2020/index%20(2).html

https://www.tcd.ie/medicine/thkc/avert/november-2020/index%20(4).html

https://www.tcd.ie/medicine/thkc/avert/january-2021/index%20(6).html

https://www.tcd.ie/medicine/thkc/avert/february-2021/index.html

https://www.tcd.ie/medicine/thkc/avert/march-2021/index%20(7).html

https://www.tcd.ie/medicine/thkc/avert/april-2021/index%20(8).html

 

 

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.