Wegeners Study

[gunnyl]

Didn't see this posted already so thought I would throw this out there for anybody who is close to one of these facilities and wants to participate in the Study:

Study Name: 5505 - VCRC Longitudinal Protocol for Granulomatosis with Polyangiitis (Wegener's) and Microscopic Polyangiitis

About this study ~

This update also provides information such as a study summary, eligibility criteria, and a list of participating center locations. If you are interested in participating in this study or you have more questions, please contact the center nearest to you.

Study Status: Recruiting

For: Microscopic Polyangiitis (MPA) Granulomatosis with Polyangiitis (Wegener's) (GPA)

Summary: In the longitudinal studies, clinical and laboratory information will be collected on patients with vasculitis to study the disease over an extended period of time. The data from the longitudinal studies will be used by scientists to study the genetics and causes of vasculitis, find new ways to track disease and predict responses, to understand how to treat patients, and much more.

How to Participate: Please do not respond to this e-mail. In order to participate in a study, you must personally contact any of the participating institutions listed below by phone or e-mail. Please contact the participating institution that is closest to your location. Boston University School of Medicine (VCRC) Boston, Massachusetts Principal Investigator: Paul Monach Contact Person: Manuella Clark-Cotton Office: 617-414-2509 Email: [email protected] Cleveland Clinic Foundation (VCRC) Cleveland, Ohio Principal Investigator: Carol Langford, MD, MHS Contact Person: Jayson Zadzilka Office: 216-363-2095 Email: [email protected] Mayo Clinic (VCRC) Rochester, Minnesota Principal Investigator: Ulrich Specks, MD Contact Person: Sara Biorn Office: 507-284-4862 Email: [email protected] Mount Sinai Hospital, Toronto (VCRC) Toronto, Ontario Canada Principal Investigator: Simon Carette, MD Contact Person: Julia Farquharson Office: 416-586-8616 Email: [email protected] St. Joseph's Healthcare Hamilton (VCRC) Hamilton, Ontario Canada Principal Investigator: Nader Khalidi, MD Contact Person: Sandra Messier, RCT Office: 905-522-1155 x 35873 Email: [email protected] University of Pennsylvania (VCRC) Philadelphia, Pennsylvania Principal Investigator: Peter Merkel, MD, MPH Contact Person: Alexandra Giardino Office: 215-614-4407 Email: [email protected] University of Pittsburgh (VCRC) Pittsburgh, Pennsylvania Principal Investigator: Kathleen Maksimowicz-McKinnon, D.O. Contact Person: Dawn McBride, RN, BA Office: 412-586-3545 Email: [email protected] University of Utah (VCRC) Salt Lake City, Utah Principal Investigator: Curry Koening, MD, MS Contact Person: Julieanne Nielsen, BS Office: 801-585-0798 Email: [email protected]

[Sangye]

Thanks for posting it, gunnyl. I wonder why JHU isn't on the list? I also got an email from them about another study, and JHU isn't on that list either. I put it on MY list to ask Dr Seo in a couple weeks when I see him.

[drz]

I gave 12 tubes of blood for this study last week. I have been in it for past year. I get a copy of lab results and recommendations regarding future treatment so it is a great way to get excellent monitoring of the GPA. They even give you $25 per visit to cover your lunch but rest of expenses are on you. I had option of coming quarterly or once a year.