VCRC Enrolling Participants for Genetic Study at 2 New Centers

[Sangye]

I got an email from the VCRC (Vasculitis Clinical Research Consortium) announcing that Mayo Clinic (Minn) and Johns Hopkins are now enrolling participants in the longitudinal genetic study. This has been an ongoing study that I think originated at Mt Sinai in Toronto.

Here's the info, with all the centers where you can participate. I was surprised to see a few of the locations that are on the list, so everyone please check it out even if you don't live near a major center.
Vasculitis Clinical Research Consortium - Take Action (http://rarediseasesnetwork.epi.usf.edu/vcrc/research/WGMPA-5505.htm)

Also, please consider registering with the VCRC (link at the bottom of that page).

[NicShaf]

I signed up for the VCRC. I wish they had more trials in the So Cal area...or the West Coast in general.

[renidrag]

Sangye: If I were to sign up at BU would my WG be treated or just monitered. I guess the question is do you think this would be like a total care package? I will sign up for the VCRC. And I applied at BU.
Dale

[Sangye]

I don't know if they require you to be a patient or if you can just go and submit a sample. I'd sure love to see you treated at BU, though.

[norcalian]

Yeah - there's not a whole lot going on with the West Coast. I signed up for the consortium, but I'm not sure if they can get my samples locally or not. Utah is the closest center.

[pberggren1]

I got the same e-mail.

Maybe I will ask my doc if I should contact them to see if I can participate.

[renidrag]

I sent an e-mail to BU and they already replied. I told them Dr. Stone at MGH was my Rheumatologist and to please not hold it against me. They are doing two studies, one just a blood DNA and one time visit. The other they called a Longitudinal Study and would require a visit every three months. I asked to be part of that because this could be my Insurance answer, I hope. Debbie is thrilled. Thank you so much for this information. See ? Another life touched today. Best to you
Dale

[Sangye]

Oh, that is SO cool Dale! I sure hope it works out. :thumbsup:

[vdub]

I might be wrong, but I believe when you give one sample of dna for any VCRC study, then it goes to everyone in the consortium and is used in multiple studies. Believe I read that somewhere. I gave to Mt Sinai about 8 months ago, but regardless of that I signed the doc I got yesterday and sent it on to Salt Lake. I'll give them DNA in a couple weeks during my doc visit.

[pberggren1]

Yes, I believe you are right vdub.

[Brooke]

I joined and also sent an email to the lady at Mayo Clinic in Rochester, she already replied! She said she already spoke to Dr. Keogh on April 4th! They must have looked at my info already! She said she is going to send me some info in the mail.

I will probably go to Mayo in August for my follow up and I will probably meet her then.

[Brooke]

Oh, and thank you Sangye :):):):):)

[Sangye]

LOL You're welcome! Whenever I'm at JHU and see a poster for a new study I ask Dr Seo if I qualify. He always laughs and says, "Don't worry. I already keep an eye on studies for each of you." There is currently a trial studying plasmapheresis for those with lung hemorrhage. I've always wanted to do that treatment. Too bad--I don't qualify.

I think the only one I've qualified for so far is the genetic study. :rolleyes1:

[drz]

I got the same e-mail.
Maybe I will ask my doc if I should contact them to see if I can participate.

I talked with my rheumatolgist about it and he said they would send them whatever samples or info they needed. I don't think we need to do anything other than give our consent to send the stuff they want for the study.

[drz]

Has anyone else been contacted about this study? So far it appears you have to schedule and pay for a visit to see Dr. Specks who decides if you qualify for the study, then they may take a DNA sample. Not sure if it can be done in one visit or not yet. I asked them to send me more info.


I got an email from the VCRC (Vasculitis Clinical Research Consortium) announcing that Mayo Clinic (Minn) and Johns Hopkins are now enrolling participants in the longitudinal genetic study. This has been an ongoing study that I think originated at Mt Sinai in Toronto.

Here's the info, with all the centers where you can participate. I was surprised to see a few of the locations that are on the list, so everyone please check it out even if you don't live near a major center.
Vasculitis Clinical Research Consortium - Take Action (http://rarediseasesnetwork.epi.usf.edu/vcrc/research/WGMPA-5505.htm)

Also, please consider registering with the VCRC (link at the bottom of that page).

[vdub]

Gave my sample....