View Full Version : WG genetic study

10-09-2008, 07:05 AM
Last post of the day.

Back in the summer I participated in the following study:

Identification of Novel Wegener’s Granulomatosis Susceptibility Genes

Katherine A. Siminovitch, MD Location: Mount Sinai Hospital, Toronto, Ontario, Canada

Link off the Vasculitis Foundation website:
Identification of Novel Wegener’s Granulomatosis Susceptibility Genes | Vasculitis Foundation (http://www.vasculitisfoundation.org/IdentificationofNovelWegenersGranulomatosisSuscept ibilityGenes)

They sent the test kit to me. My rheumy's lab took the samples and returned them for me. Very easy, and they are only looking for WG's patients not relatives at this stage.

The staff was very responsive.

12-14-2008, 07:08 AM
Did you hear anything back about this? Do you know how it's proceeding? I read on the Vasculitis site that they are still looking for patients but the post looks like it's from early this year.

12-14-2008, 07:32 AM
I know they received the sample. I did have a URL where I could track study updates, but an e-mail upgrade means I can no longer locate the e-mail. I look at it this way, my little contribution to long term understanding.

There two studies one at Johns Hopkins and one at Mount Sinai in Toronto. Hopkins never invited me to participate so I participated with Mount Sinai. As I understood it at the time, both studies were long-term and would be recruiting for awhile. The Mount Sinai study initiated around 2004 I believe.

12-14-2008, 08:40 AM
Damn those email upgrades :) Thanks Rodger. I'm sure that if they do discover something we'll find out!

12-14-2008, 09:37 AM
I just emailed the contact person for the VF study to see if they're still recruiting, and if not, to find out the results of the study. I'll post if/when I hear anything.

12-16-2008, 04:52 AM
Here's a copy of the email I received back. Good news is that they're still looking for blood samples. We got blood. Let's give 'em some! :D

Thank you for your email! The study information is as follows:

What we ask participants to complete is:
- a consent form
- questionnaire (for demographic information and family history of autoimmune disease)
- a one-time blood sample, drawn and shipped with the materials provided.

I will send the paperwork as well as the bloodkit via FedEx, so I will need your mailing address and phone number.

We ask to be billed for the blood draw and we use our own FedEx account number for shipping the samples back to Toronto. There will never be a need for you to travel for the study, except to a local lab or doctor's office for the blood draw.

If the lab charges for the blood draw, it can be invoiced to us. If you ever have any questions or concerns about the study, please feel free to contact me either by email or by collect phone at 416-946-4501 x3297.

Best wishes,
Jennifer Campbell
Clinical Research Coordinator
Wegener's Granulomatosis Genetic Study
Mount Sinai Hospital
416-946-4501 x3297

12-16-2008, 07:01 AM
I'd love to participate in that study....if I was in the US.

Thanks for sharing the details!

12-16-2008, 07:18 AM
Hi Andrew,
I think they're in Toronto. Maybe email them to ask if Aussie blood is acceptable? :p

12-16-2008, 06:26 PM
Hehe yeah I thought about emailing them but sending blood overseas would be a logistical nightmare :)

12-17-2008, 12:51 AM
Yeah, the only way to get your blood overseas is to bring it there yourself--in it's original container....

12-17-2008, 06:28 AM
Yeah, the only way to get your blood overseas is to bring it there yourself--in it's original container....

HAHAHAHAHA....I should have thought of that. It'll slip right past customs as well :D:D:D:D