Survey about the future of the FAIRVASC project - have your say

[zoe69]

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.

forms.office.com/pages/resp...

[PMRpro Ambassador]

I assume then that you must be a patient in one of the countries with a register? I see Germany, Austria and Switzerland have a German-speaking one - which this German region where I live is not part of!!!

[zoe69 in reply to PMRpro]

To say your opinion, you don't have to be part of any registry. Your opinion as a patient matters.

The registries in the countries will slowly expand and new registries will be created as well. If the FAIRVASC platform will be kept alive, the new registries will be added. It takes sometime to get all the paperwork done as this registry aims to be international but GPDR is applied differently in countries.

[nuigini]

Is the survey open to Canadian residents?

[zoe69 in reply to nuigini]

As long as you are a patient or a carer, I cannot see it being a problem. The bigger idea would be to have an international registry.

[Hoofprints]

Thanks for posting. I've just completed it