We are asking you to help us learn more about the medical management of people with Trisomy 18 who are 1 year of age or older. To date, there are essentially no data about these long term survivors with Trisomy 18. And although we know it is a tough issue, we also need to learn about the cause of death for those who have passed away after their first birthday.
We are inviting the parents or guardians of children or adults with Trisomy 18 who are 1 year old or older to complete an online survey. We will use the information gained from this survey to create a Management Guide for families and their physicians. This will help them to be proactive regarding their care based on data from the community.
The survey should take about 10 to 20 minutes to complete depending on the extent of the medical history you have ready access to.
