Participating in STXBP1 RARE-X Data Collection Program

Hello everyone!

I just wanted to share my experience in participating in the Rare X data collection.  My husband and I decided that sharing our daughter’s health information was important to us in order to help researchers trying to cure stxbp1.  We figured the more information that researchers have, the better the chances of that happening!  So, we personally had no hesitation when considering the Rare-X data collection.  I found the process very easy; however, I did listen to the webinar presentation that explains each step pretty well.  I would suggest checking this webinar out before starting the sign up. You can find the webinar recording at stxbp1disorders.org/rare-x. 

It is under an hour and really breaks it down well.  (Since it is a recording you can even fast forward a bit through parts you are already familiar with!)  I think it made it very easy for me to feel familiar with the different screens.  Honestly, it meant I didn’t feel the need to read over every little thing because I already had an idea about what that page was talking about.  I did notice that on my computer I did not have luck creating an account when using Safari but Chrome worked no problem.  The registration process takes about 20-30 minutes. Once you are signed in and start filling out your surveys/studies you can save those at any point in your progress which is nice because then you don’t even have to commit a large amount of time.  I found the process very simple and I could do it in parts on my own schedule. 

If you have any questions, I would be happy to try and help or at least get you to the right person!  Please don’t hesitate to reach out here. Please consider signing up for the data collection to help find a cure for our wonderful kiddos! 

Sandi Ray