In 2011, retired Yale Professor Martin Shubik provided seed money to the Yale School of Public Health to begin collecting preliminary data on Inclusion Body Myositis (IBM), a rare disease about which relatively little is known and for which there is no cure. Professor Shubik himself was diagnosed with IBM in 2003.
A small team of researchers and physicians was assembled under the leadership of Professor A. David Paltiel to design a self-reporting survey of IBM patients in North America. This survey had four specific aims: 1) to describe the demographics of the IBM patient population; 2) to describe the nature of IBM disability by characterizing the trajectory of disease symptoms, its impact on activities of daily living, and its effect on quality of life; 3) to ascertain the means of diagnosis; and 4) to determine whether the natural history of disease varies between population groups. The survey included questions related to demographics, diagnosis, clinical care, and daily living.
From August 2012 to February 2013, we received more than 900 responses to the survey. Today, the Inclusion Body Myositis Disease Registry at Yale is the world’s largest systematic categorization of IBM. The remarkable response was due in large measure to the support of The Myositis Association (TMA), which distributed our survey to its member IBM patients and The Muscular Dystrophy Association (MDA), which posted articles in Quest magazine and emailed information about the survey to its registered IBM patients.
In January 2015, the results of the initial survey were published in Muscle & Nerve:
IBM is considered an “orphan disease.” There is not the same level of research being conducted or information available as with many other more prominent diseases. Our hope is that the Inclusion Body Myositis Disease Registry at Yale will provide additional insight for patients, doctors, and researchers about IBM and how it affects those who suffer from it. It is also our hope that this may in turn will help spur future research into the disease and ultimately towards helping find a cure.