Research Projects

Various institutions are doing research into the causes, mechanisms, treatments, and cures for IBMPFD.  This page will identify and enable you to link to various pieces of information necessary to participate in the research or to obtain more information about the research and research results.

You must contact the researchers, since the researchers are prohibited by regulation from contacting you.

The following link is for an effort headed by Doctor Charles Smith of the University of Kentucky (Lexington) into some of the aspects of the frontotemporal dementia associated with IBMPFD.  The link takes you to Word documents with more information.

UK Project Description  A description of the goals of this research headed by Dr. Charles Smith at the University of Kentucky.  Imbedded in the description are links to various other pertinent documents. This project is funded through 30 June 2011 by NIH.

For further information, please contact Barbara Martin, Study Coordinator at

Barbara J. Martin, M.A. Research Coordinator Neurology-MRISC
28 Davis-Mills Bldg. 800 Rose Street Lexington, KY 40536-0098
phone: 859.323.0494  fax: 859.323.1068

UCI Research  The Kimonis Laboratory at University of California Irvine headed by Dr. Virginia Kimonis is requesting participants for research and identification of affected persons associated with IBMPFD.  For more information, contact Dr. Virginia Kimonis or Marie Wencel at:

Virginia Kimonis, MD
Chief, Division of Genetics and Metabolism
Professor of Pediatrics
University of California Irvine Medical Center
101 The City Drive South, ZC4482
Orange CA 92868
Tel: (714) 456-2942, Fax:(714) 456 5610
Pager (714) 506 2063
Natural History  The Kimonis Laboratory at University of California Irvine headed by Dr. Virginia Kimonis is requesting participants for a research study that will aid in early diagnosis as well as monitoring of disease progression of limb girdle inclusion body myopathy and Paget disease of bone. The studies will allow us to evaluate your muscle strength and function, lung function, echocardiogram of your heart and presence of Paget bone disease. The consent form contains additional information, including brief descriptions of the possible tests one may do. One should bring a family tree to provide information that will help the genetic tracing. The Quality of Life survey form and the IBMPFD Symptoms survey form should be reviewed as these will be completed during the interview process.

University of Miami There is a research project regarding the possible linkage of ALS and IBMPFD. Contact: