Survey for People with IBM Reports Early Findings

Investigators conducting an online survey to gather information from people with inclusion-body myositis report early results and ask a few more questions

by Margaret Wahl on November 27, 2013 - 5:00am

Investigators conducting an online survey launched in January 2013 to gather anonymous information from people with inclusion-body myositis (IBM) are now reporting preliminary results and are asking the original respondents to complete a short supplementary survey.

The survey is being conducted by A. David Paltiel, a professor of public health (health policy) and management at Yale University, with colleagues there and at the Myositis Association.

The purpose of the original and supplementary surveys is to provide privacy-protected information that can be used to guide research and develop standards of care in IBM.

Early returns

In October 2013, Paltiel reported the following early results from the survey:

  • About 1,000 usable responses have been received, making this perhaps the largest IBM survey ever undertaken.
  • IBM appears to affect males more often than females.
  • IBM has little effect on life span.
  • Patients with IBM are prone to falls.
  • The likelihood of requiring a wheelchair increases significantly after the first eight or nine years of living with the disease.

Supplementary survey

Paltiel and his colleagues have created a supplementary survey that asks two short questions about the timing of symptom onset. They request that previous respondents revisit the website and answer these questions. They estimate that this participation will require about five minutes.

Those with IBM who have not answered the first survey are invited to respond to both online surveys.

To participate

To complete the original and supplementary survey, go to Research Project on Inclusion-Body Myositis.

To complete only the supplementary survey (if you've already completed the original), go to Supplementary Inclusion-Body Myositis Questions.

Questions can be directed to A. David Paltiel in New Haven, Conn., at (203) 785-2854 or

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