WG Genetic Study

Hi everyone,

My name is Alida and I’m a clinical research coordinator at a hospital that is currently runing a genetic study to determine what gene(s) might be responsible for causing Wegener’s.

What we ask of our participants (who must reside in continental North America, at present) is to complete and send in a consent form and a questionnaire, then have a blood sample drawn and sent to us at the hospital. If you live outside of Canada, we can send you a blood kit that includes the 4 vials we’d need, as well as the FedEx documents and shipping materials, and the customs documents needed to ship biological specimens across the border.

If you’re interested in participating, please contact me only by email at: . We need approximately 500 affected participants, and are only teetering at about half that amount right now.

Many thanks for reading this, too. I know WG is an incredibly elusive disease, and quite terrible in how it manifests itself. Together, we can work together towards better diagnosing this disease, and better treatments for it as well.

Good health to you,
Alida

Hi everyone,

I thought it might be time that I posted an ad for the study again!

Our researchers have identified two candidate genes (genes that seem to be at a higher frequency in the WG population than the regular gene pool), but in order to solidify this genetic basis we are in need of more participants with a definite diagnosis of WG.

What we ask of our participants is:
-complete a consent form and questionnaire
-have a one-time blood draw

It’s completely free to participate, and if you live outside of Ontario, I will send you a ‘blood kit’ that includes the vials you’d need for the draw, FedEx shipping materials and waybill, and customs documents in order to get the biological specimen back into Canada.

If you’re interested in participating, please send an email with “WG genetic study” in the title to clinicalgenet.research@gmail.com. I’ll respond as soon as possible!

I will be at the Vasculitis Foundation symposium in Rochester next month to hand out kits for the study. I’ll be at the Kahler Grand’s lobby each day of the symposium, so please keep your eyes out for me! I’m very excited to get to meet whoever is able to come!

Wishing you the best in health,

Alida Pokoradi
clinicalgenet.research@gmail.com