Here’s the UCLA KAT6A survey!
Please fill it out once for your child. There is logic built in, but the last question now states that it is the end and is “Please describe any other important issues with your child that you would like us to know. We will use this information to identify other areas to follow up on, both clinically and on the research setting”
We are trying to collect information from the people who know the KAT6A kids the best: their families! Please click on the link below. If you started the survey earlier and want to complete it, you can continue as long as it is on the same device you started on.
I know many of you are involved in other research projects and we have gathered information from many clinicians. However, we believe that families provide the richest source of information about things that might not be easily accessible through a clinic note. Our goal is to collect the information so we can we can better understand how KAT6A mutations affect different organ systems and then create clinical guidelines for you and your physicians. The more individuals we have here the more comprehensive these guidelines will be.
So please fill this out as best you can by March 15, 2017.
If you have any questions, email firstname.lastname@example.org