The VCRC Vasculitis Illness Perception (VIP) Study

[Sangye]

Hopefully everyone will register with the Vasculitis Clinical Research Consortium (VCRC). I got an email from them today with a study being conducted via internet survey. It's all about how people with vasculitis perceive their illnesses. It only takes a few minutes to complete.

Here's (http://rarediseasesnetwork.epi.usf.edu/vcrc/research/ALL-5533.htm) the info page on it, with info on how to participate.

[drz]

Hopefully everyone will register with the Vasculitis Clinical Research Consortium (VCRC). I got an email from them today with a study being conducted via internet survey. It's all about how people with vasculitis perceive their illnesses. It only takes a few minutes to complete.

Here's (http://rarediseasesnetwork.epi.usf.edu/vcrc/research/ALL-5533.htm) the info page on it, with info on how to participate.

I got the invite and it took me to this page too but I don't see a link for taking the survey. They said they fixed it so us old guys can do it too as they didn't intentionally exclude us, just a programming error.

[Sangye]

The link is in the email they sent you. There's one that takes you to the information page, and another that takes you to the survey. I didn't see it at first, either.

[jola57]

I got my email yesterday and will definitely register.

[renidrag]

The link was hard to find, I went to another message and when I went back it appeared in the blue as a link. It still took me a couple of times to get into it. Yes, I am old also, I wonder if it was part of the test?
Dale

[Sangye]

LOL Dale. :laugh::laugh:

[Dirty Don]

Got in finally...registered, got my email link, reregistered, not sure what I'm gonna get out of it, but it's on my resource list now. Thanks Sangye!

[drz]

I found the right link and got in to where I could update or edit my info, but when I wanted to take the survey it said it had no record of me, so I guess my edited profile was a figment of my imagination or a dream I had while sleep surfing on the internet.:biggrin1:

[HypnoticEyez]

I registered a month ago but never got an email about taking a survey and didn't see a link on the website to take the survey.

[jola57]

It said that 2000 people are to take the survey so maybe not everyone was given one

[drz]

I got the email invites and tried several times but kept getting messages that I don't exist in their data base, re-registered again, emailed the contact person and got no response so gave up trying to do the survey. I am in the longitudinal study and DNA study for GPA which require personal visits to one of the GPA specialty centers.

[delorisdoe]

I got the email invites and tried several times but kept getting messages that I don't exist in their data base, re-registered again, emailed the contact person and got no response so gave up trying to do the survey. I am in the longitudinal study and DNA study for GPA which require personal visits to one of the GPA specialty centers.

drz...there is a new webinar this monday. fyi

[pberggren1]

drz...there is a new webinar this monday. fyi

Oh goody, a new word: webinar: spiders on the internet.

[Aunnie]

Hi All,

FYI

I am a patient at Boston Univ. Med. Center and am a Patient of Dr P Monach and Dr P Grayson,the docs that are conducting the survey ,so I mentioned I could not get the link for the survey.
Dr Grayson said to email the person listed in the text. He also said they have been having a lot of trouble with the host setting up the survey. They have been trying to get it on line for us since October. So I guess be patient and we will be able to participate.

Aunnie

[drz]

They sent a link that work to get started doing the survey but then the web site lost connection, I got connected again and started again, and it lost connection again. My internet is working fine for all other sites so it was their web site that had the problem.