In 2012, a group of researchers based at Yale University surveyed 916 patients with Inclusion Body Myositis (IBM) in North America to examine the demographics, natural history, and clinical management of this rare disease. The survey included questions related to demographics, diagnosis, clinical care and the activities of daily living."
Based on the results of our survey, we developed an “IBM Personalized Index Calculator” to allow people with IBM to compare their own personal experience with the disease to that of others with IBM. By answering a few short questions about themselves, their medical history, and their physical functioning, IBM patients obtain a personalized report of their score on an IBM functional rating scale (a measure originally developed by C.E. Jackson and Colleagues
) compared to the scores of all the patients in our survey.
The IBM Personalized Index Calculator now allows IBM patients to track their own disease progression and for researchers to observe that progress as well. We hope that this will permit both patients and researchers to gain a better understanding of how the diseases progresses and how it affects different people over time.
To participate in tracking your progression with the IBM Personalized Index Calculator, you will first need to create an account by providing your name, email address, and a password of your choosing. Once you have created your account, you will be able to log-in and save your results from the IBM Personalized Index Calculator as often as you wish. Creating an account here will give you and Yale researchers access to your ongoing responses to the Calculator questions. Responses will remain anonymous. We will use an ID # to anonymously track your responses over time. We will never be able to link that ID # to any of your personal or identifying information.
To create a complete picture of your experience, we strongly encourage you to update your IBM index record every 3 months. Friendly email reminders will be sent out to help you steadily monitor your IBM status. You may elect to stop receiving these reminder emails at any time.
You also have the option to join our Registry
, which is separate from participating in the IBM Personalized Index Calculator. If you choose to join our Registry, you will be asked to provide your name and contact information so that we may contact you directly in the future about any updates, news, or possible future surveys. We will never share your contact information with anyone else without your express consent. And you can ask us to remove your name at any time.
If you wish to create an account for the updated IBM Personalized Index Calculator, click on the “sign-up” link above.