Stanford University 

Measuring the Psychological Effects of Growing Up  

at Risk for Long QT Syndrome

NEEDED:

Adults (ages 18 and older) who grew up in a family affected by long QT syndrome, and who knew before age 18 that the disease was in their family. 

Did you learn you were at risk for long QT syndrome when you were still a child or a teenager? Did you wonder if you would someday experience symptoms of the disease? Individuals from long-QT families are needed for a study of the psychological impact of growing up at risk for long QT syndrome. This study is being conducted by researchers at Stanford University.

We are looking for a wide variety of participants, including ALL THREE of the following groups:

1. You had genetic testing before the age of 18 and tested POSITIVE.  
   (This means you WERE at risk to develop symptoms of the disease. YOU DID inherit the genetic change that causes long QT syndrome in your family.)
2. You had genetic testing before the age of 18 and tested NEGATIVE.
   (This means YOU WERE NOT at risk to develop symptoms of the disease. You were unaffected, and YOU DID NOT inherit the genetic change that causes long QT syndrome in your family.)
3. You did not have genetic testing before the age of 18.  You grew up with the knowledge that you might have inherited long QT syndrome, but with no clear genetic test result to tell you "yes" or "no". 

"What is the purpose of this study?"

We hope to better understand how children and teens are affected by growing up at risk for this life-threatening disease. We also hope to discover whether genetic testing during childhood or adolescence increases or lessens that psychological burden.

"How much of my time would be required?"

This study involves an online survey (a questionnaire you take over the internet). The survey questions take approximately 40 minutes to complete.  They include multiple-choice questions about how you view yourself, your health, long QT syndrome, and the future. Some of these questions ask about your moods and emotions.

"Can my answers be traced back to me?"

No. Study participation is ANONYMOUS. We do not ask for your name in this survey. Your answers to the survey questions cannot, and will not, be traced back to you.

"Who is eligible?"

You are eligible if:  

You are now age 18 or older and: 

• You learned as a child or teenager (when you were under 18 years old) that long QT syndrome runs in your family, meaning there was a chance you could have inherited the disease).
• You did not have an electrocardiogram (EKG) before age 18 that DEFINITELY showed a long QT interval (this is one way of diagnosing long QT syndrome). In other words, no doctor was able to diagnose you with long QT syndrome before age 18 based ONLY on looking at your EKG.  (It's okay if your EKG was "borderline".) 
• You did not have a cardiac arrest before age 18.  (Syncope, or "fainting", before age 18 is okay) 

 "What if genetic testing during my childhood proved I'm not at risk for long QT syndrome? Am I still eligible for the study?"

Yes. We need your participation no matter what your genetic testing showed. (And even if you never had genetic testing.) Healthy brothers, sisters, and children of people who were diagnosed ARE eligible. 

"Will I be paid?"

You are eligible for a raffle to win one of two $50 gift cards to Amazon.com. You are eligible for this raffle even if you do not participate in the research study.

"How do I participate?"

For more information about this study, please contact Kyla Dunn at Stanford University via email: kyladunn@stanford.edu (email preferred) or by phone at 650-724-7190, mailbox 2.

For general information about participant rights, contact 1-866-680-2906.

Thank you for your time and interest.

Kyla Dunn, BS

Masters Student

Human Genetics and Genetic Counseling

Stanford University School of Medicine

Email: kyladunn@stanford.edu