When retired Yale professor of economics Martin Shubik was diagnosed with inclusion body myositis (IBM) in 2003, very little was known about the disease. At the time, few professional resources had answers to simple questions like “What can I expect from this disease?” So Dr. Shubik turned to the IBM patient community. Professor Shubik strongly believed in the ability of his fellow patients to come together to contribute something of value to the nascent fields of clinical and scientific IBM research.
In this spirit, Dr. Shubik raised the resources and gathered professional colleagues and friends from across Yale University to begin collecting data on this poorly understood disease. By 2011, this group came to be known as the Inclusion Body Myositis Registry (IBMR) at Yale. Since its establishment, the IBMR has been dedicated to supporting IBM patients and caregivers, as well as physicians and researchers, through knowledge and insight generated by the IBM patient community.
The IBMR launched its first project in 2012: a survey aimed at learning the clinical and demographic characteristics of those afflicted with the disease. With help from The Myositis Association, this survey was distributed to IBM patients across North America and collected 916 responses—the largest collection of information on IBM to date! These responses helped to uncover a number of interesting patterns, and the findings were summarized in a 2015 paper published in Muscle & Nerve. In addition to providing valuable research insight, this study showed how a group of patients could indulge in self-help to produce something of worth both to patients and to doctors.
The IBM Personalized Index Calculator: An Interactive Tool
Data collected from the IBMR survey was later used to create the IBM Personalized Index Calculator, a free, online tool designed to help IBM patients track how their disease changes over time. The Calculator works by converting a user’s answers to a short series of questions about their condition into a numerical mobility score. Based on the IBM Functional Rating Scale (IBMFRS), a clinical trial outcome metric, the score gives the user a quantitative measure of their functional ability. By regularly updating their mobility scores, users are able to track how their condition changes over time.
The Calculator and other resources can be found on the IBMR website. These resources are free and available to everyone. Anyone with IBM is encouraged to take advantage of them!
Here’s how you can help!
The IBM Personalized Index Calculator is at the core of the IBMR’s new ongoing study. This study aims to learn how IBM affects different people over time. To achieve this, all Calculator users are encouraged to update their responses to the IBMFRS questions every three months in order to paint a more complete picture of the gradual effects of IBM for themselves and for the research community. To learn more or to sign up, please visit the IBMR Calculator page.
Like the 2012 Survey, the success of this new project once again depends on the IBM patient population coming together and sharing experiences that will help to reveal trends and knowledge for the benefit of all affected by this disease. Anyone with IBM is encouraged and invited to participate in this collective effort to expand our knowledge about IBM!
If you would like to receive project updates and news about the IBMR, you may add your name to the Registry here.