Today we have published the first set of data from the Myhre Syndrome Foundation Patient Registry. To date, 87 participants have filled out the questionnaire providing a medical history for themselves or on behalf of someone with Myhre.

In the data you will see basic demographics, as well as information on pulmonary, cardiovascular, hearing, and skeletal features of Myhre syndrome. These were areas that the Myhre community indicated as their top priority when it came to knowledge sharing but the registry goes far beyond these areas in order to collect a comprehensive data set.

This information is a great resource for the Myhre community but also for medical, pharma and research organizations. Each year we will analyze more findings and provide updates on the developments we are seeing within the Myhre community.

If you’re already enrolled don’t forget to login each year and update us on any new information. When you choose to participate you can also choose who gets to see and use the information you provide. Your privacy is important to the Myhre Syndrome Foundation. As always, please contact us with any questions or concerns about participating at research@myhresyndrome.org and don’t let language be a barrier. We can help!