New IBM study

I just wanted to pass this on to those of you who may not be signed up with the The Myositis Association (which is free in case you haven't signed up yet)

E-mail from the TMA:

Dear IBM patients,

We are writing to give you the most recent information provided to TMA from Novartis regarding the upcoming BYM338 trial for sIBM. Although all the details are not yet entirely clear, we do want to share with you what we know at this time. There are 6 sites in the U.S. so far that will participate in the trial. Additional sites may be added in the U.S. as well as outside the U.S. You are able to call these sites now to ask that you be included among those who they will review and consider for the trial. Each site will make its own determination as to who is eligible for the trial. There is conflicting information between what we have been given by Novartis and the information about the trial at but we are relying on the information we have received from Novartis thus far.

The following are the sites, contact information and investigators that we know of. Please be patient in contacting the site nearest to you, if you want to be considered for the trial. The sites are likely to be receiving a lot of requests at once since this email is going to over 2,000 IBM patients who are in TMA's database.

This is a large undertaking and details are still being worked out at some of the sites. You can also call Novartis if you cannot get information at the sites listed below. Novartis' number for the trial is 1-888-■■■■■■■■.

Brigham and Women's Hospital
Drs. Steven Greenberg and Tony Amato

Massachusetts General Hospital
617-■■■■■■■■ or ■■■■■■■■■■■■■■■■■■■
Dr. William David

Arizona Neuromuscular Institute
Dr. K. Sivakumar

University of Kansas Medical Center
Dr. Rick Barohn
Dr. Mazen Dimachkie

Ohio State University
Dr. John Kissell

University of California - Emma Irvine
Att: Veronica