If you participated in the MYOVISION registry research project, please read this notice.

The MYOVISION registry, in which many TMA members participated, is being closed in the spring of 2019 at Cincinnati Children’s Hospital. After the protocol closes at CCH, the final dataset will reside with investigators at the National Institutes of Environmental Health Sciences (NIEHS) to complete the study objectives and analyses. By housing the data with NIEHS, future researchers may also be able to apply to use the registry database for additional studies not yet performed. Study subjects can be assured that TMA will be the sole group to re-contact any study subjects in the future, if needed. Anyone who previously participated in the study who would like to be excluded from future analyses of the data should send notification in writing to Linda Kobert, RN, MSN, Research and Communications Director, The Myositis Association, 1940 Duke Street, Suite 200, Alexandria, VA 22314.

If you have questions, please email linda@myositis.org.

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