SOFT Family, the Trisomy 18 Registry is requesting our help in a survey studying long-term survivors with Trisomy 18.
If your child is or lived to at least to 1 year old your help is needed. Please share with other families of children who have lived at least 1 year whether they are living or have passed.
The Trisomy 18 Registry is asking for our help:
“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 also known as Edwards Syndrome. 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.”
If you have questions about this research project you can contact the Program Manager, Annice Hill. Click here for her email address.
The Chromosome 18 Clinical Research Center has a nearly 30 year history of improving the lives of people with chromosome 18 conditions through research. You can learn more about us by visiting our website.
Thank you in advance for your participation in this survey of this under-studied group of people.