Seizure Survey Now Underway

November 17, 2009

IDEAS is in the midst of a formal seizure survey and we encourage all families to participate!

We are collecting data about the types of seizures experienced by individuals with dup15q and the treatments they have tried. To date 25 families have completed the survey. We are really hoping to get up to 100! We invite all families to participate in this survey, even if your child has never had a seizure! (It is especially important that families whose children do NOT have seizures participate so we can accurately determine what percentage of kids with dup15q syndrome develop seizures).

If you need copies of the registration forms, you can email Nicole Cleary at nicleary503@comcast.net and she can send them to you via email or regular mail.

If you have sent your consent form and other study registration information to Elwyn and received the link to the on line survey but haven't had a chance to complete it, please do so soon. The preliminary data is being presented at an Epilepsy conference in December.

If you have sent in your information but have not yet received the survey link, you can contact Candace (Elwyn study coordinator) at CTietsworth@arcadia.edu and ask about the status of your study info.

Thank you to those families who have already participated! We are hopeful that by collecting information about which seizure meds are working for your kids, we will be in a better position to make treatment recommendations in the future.

IDEAS  P.O. Box 674,  Fayetteville, NY 13066  USA

1-877-IDEAS15 (1-877-433-2715)

info@dup15q.org