Survey Open for People with IBM

Researchers are conducting an online survey of people with inclusion-body myositis that they hope will lead to an ongoing IBM registry

Article Highlights:
  • A survey that asks people about their experiences with inclusion-body myositis is available online.
  • Investigators at Yale University hope to build a long-term database (registry) to guide research and care in IBM.
by Margaret Wahl on January 24, 2013 - 5:00am

A survey of people with inclusion-body myositis (IBM) 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 investigators, including a Yale professor who has IBM, hope that information from the online survey eventually can be used to help develop an IBM website and registry — a database that contains privacy-protected information on patient demographics and medical histories that can be used to guide research and develop standards of care.

Completing the survey will require about 45 minutes.

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

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