Vasculitis UK alongside the Ireland's and Netherland's Vasculitis organisations participated in the FAIRVASC project.
FAIRVASC is a Europe-wide research project, which has created a platform to link seven existing European vasculitis registries, creating a rich, reliable clinical data resource to improve future research and service planning.
Please read the post before answering the survey (it is very short).
The project will end in November and the question is what would we want?
Close the project and be happy with what we learned from it in these 3 years?
Continue to have the platform open and have a live vasculitis registry?
Who should have access to it?
I want to clarify that the data is held on each country's registry, it is anonymous so patient's cannot be tracked by who ever will have access and no private information is shared. Patient's can only be contacted by the registry they signed up for and with the terms they have agreed.
In the UK we have the UKIVAS registry.
Read more and answer the survey by clicking on the link below.
Exploring the Informational Needs for Vasculitis Patients and their Carers - Research Study 
Psychology Dissertation Project
