More on the Berlin Clinical Course Study

A family. we have decided to take part in the Clinical Course of Patients with MECP2 Duplication Syndrome Study. There was previous post on this study back in July. We have received the survey and are working on getting filled out and returned.

This is a potentially important study that could be very helpful in leaning how to better treat infections in children and adults with MECP2 Duplication Syndrome. There are two parts to the study: (1) A survey to be filled out by a physician with access to a complete health record, and (2) submitting blood and tissue samples. Families who choose to participate can choose to take part in both of these or to take part only in the survey part.

Of course, families need to make their own decisions about participation, but I hope that many families will choose to participate. This study focuses strongly on a better understanding of respiratory infections, which, as we all know, is a major life-threatening issue for individuals with MECP2 Duplication Syndrome. As families, most of us want to support research that potentially can lead to better and longer lives for our loved ones, and research can only move forward with our participation.

To receive more information about the study and/ or survey forms, please contact Michael Bauer: michael.bauer@charite.de

 

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