Wegener's Genetic Study - Looking for people with WG

[Cindy]

The goal of Dr. Katherine Siminovitch’s study: ‘Identification of Novel Wegener’s Granulomatosis Susceptibility Genes’ is to identify the genes that confer risk for disease. The study has already identified variants in three of the genes studied and determined them to be significantly associated with WG. Identification of WG susceptibility genes will provide a promising avenue to the development of improved diagnostic and prognostic tests, as well as new targets for therapeutic management.

While we are continuing to assess other gene variants for their relevance to WG, the study needs at least 250 more WG patients to donate samples to have sufficient data to develop results. We are hoping that 2010 will be the year we complete this study and we are therefore trying to recruit as many participants as possible!

It is very simple to participate in the study. Patients enroll in the study and have a blood sample drawn at their doctor’s office or laboratory and shipped to Dr. Siminovitch with the materials provided.

All WG patients are eligible for the study, regardless of geographic location, age, and gender.

If you are interested in participating, please contact the research coordinator, Keisha Carrington at:

Phone: 1-416-946-4501 x3297

Or email: [email protected] (http://www.wegeners-granulomatosis.com/forum/redir.aspx?C=d87f91291a9c44bdb9f96a86f9f821d1&URL=mailto%3aclinicalgenet.research%40gmail.com)

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

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.

I would be happy to send you a package. Please reply to this email
with the following:
- your full mailing address and phone number
- primary physician's name and phone number
- your birthdate

As well, we are expanding the study to include siblings and parents of the affected individual. If you have siblings or parents who may be interested in participating, please forward this information to them!

Thank you very much for your time and we hope you decide to participate! If you have any questions or comments, I would love to hear from you, so please send an email or give me a call J



Respectfully yours,

Keisha Carrington
Clinical Research Coordinator
Wegener's Genetic Study

[Cindy]

Hi All,

I was contacted by this researcher and wanted to post her request for subjects in case you may be interested. I do not have any information about this. So, please contact the research (and not me) with comments or questions.

Have a great day.

[Sangye]

I participated in this study at the end of 2008. It's very easy. They send you everything you need. Please do it if you can. It's a huge study and will yield a lot of useful info.

[pberggren1]

Sounds great. I have never done something like this before so I will contact her and get the package.

[nagesh]

It is very simple process , They sent a saliva kit which is self explanatory,I have drawn saliva sample of my
son and sent back to them,They sent me only one kit so that i coud not send samples of parents/siblings
i thought they would be asking for, If they require in future

[Sangye]

Nagesh, contact them and ask them for kits for parents/siblings. They'll send them directly to your relatives.

For those getting their own kit, on the paperwork there's a space to list names, address and phone of blood relatives. This is so they can send them kits. Even if you don't have blood relatives (or they don't want to participate), you can still participate in the study and provide your own genetic material.

[Doug]

The gmail address didn't work, for whatever reason. I will call the phone number instead. It is that important to make the contribution. Phil mentions relatives taking part, too. I have all of my siblings coming to town shortly for my mother's 96th birthday, and this will be a good time to get their reaction, perhaps participation.

[Sangye]

Like I always say, there's no better way to celebrate a 96th birthday than by everyone spitting into little plastic tubes. Been saying it for years.

[Lightwarrior]

Ahhh...Sangye, you are soooo eclectic, just another reason I like you so much :-)

[gwenllian111]

LOL Sangye!!!

I have emailed my details to take part in the study, and my family want to take part too. My father has dedicated most of his life to researching WG in order to save my life several times over through the years - he is keen to participate also.

[Cindy]

WOW! The researcher will be very pleased :)

You all are the best!

[jola57]

I, like Sangye participated in 2008. They sent a package with all the tubes to me and a requisition which I presented to my regular lab. They drew the blood and packaged it in a provided package and sent it back by prepaid curier service.