One of the most important aspects of the Chromosome 18 Clinical Research Center is that it gives us an easily accessible wealth of data about chromosome 18 abnormalities. Our study families have a vast amount of experience and information about life with a chromosome 18 condition. As researchers, we are able to tap into that resource to answer questions and learn more about chromosome 18 conditions. This often happens via a survey send directly to families. A recent example of this community-gathered knowledge comes from a survey about constipation management in people with Tetrasomy 18p. The findings from this survey led to revisions in the Physician Management Guide for Tetrasomy 18. In other words, the information provided by study families prompted us to update our recommendations for screening and management! The collected insights from that survey were distributed to the participating families in March. We are pleased to share these survey results with the larger chromosome 18 community today!
