FAQ



Why are you doing this study?

  • We want to detect babies with LQTS before they are born
  • LQTS is difficult to detect before a baby is born
  • Most are not diagnosed until they have a serious symptom like cardiac arrest after birth
  • We have evidence that fetal heart rate can distinguish LQTS babies from babies who do not have LQTS
  • Recognizing LQTS before the baby is born:
    • Allows the baby to receive medication to treat life threatening heart rhythm problems
    • Does not expose the baby to  medicines that could make the heart rhythm problem worse
    • Allows the baby to be born at a hospital that has experience with baby LQTS and a pediatric doctor who specializes in heart rhythm problems (a pediatric electrophysiologist)

What are the goals of your study?

  • We want to study heart rates of babies at risk for LQTS before they are born
  • In an earlier study we found the heart rates of LQTS babies before they are born are lower than babies who do not have LQTS
  • We would like to study fetal heart rates from very early in pregnancy until birth in families who have different LQTS mutations:
    • To see if the fetal heart rate can predict which baby will have LQTS
    • To see if patterns of fetal heart rate can predict whether the baby has LQTS1, LQTS2, or LQTS 3

Who can be part of the study?

  • Women who are currently pregnant between 7-20 weeks of gestation and either they or the baby’s father has LQTS 1, LQTS2, or LQTS3
  • Women who have been pregnant in the last 5 years and either they or the child’s father has LQTS 1, LQTS2, or LQTS3
  • Women currently pregnant or who have previously been pregnant and either they or the baby’s father have LQTS 1, LQTS2, or LQTS3 

What Information do you collect from me?

  • Either the mother or father’s LQTS mutation
  • The symptoms of the LQTS parent
  • Who else in your family has LQTS?
  • What medications is the pregnant woman taking?
  • If the pregnant woman has LQTS, does she have a pacemaker or a defibrillator or both?
  • The number of times the mother has been pregnant and the outcomes of the pregnancies
  • The heat rates of the baby before birth that your OB care provider measures during your monthly visits
  • The heart rates of the baby before birth that are measured by ultrasounds routinely performed
  • The baby’s first ECG after birth
  • The results of the baby’s genetic testing (either positive or negative for LQTS)

I do not live near any of study sites. Can I still participate?

  • People can participate from anywhere in the world
  • Just send us your contact information and we will call/write/email you
  • You can give us your data via email/fax/phone/snail-mail or you can enter your own data from a computer into a “REDcap” data base that no one can see except you and the study team
  • Do I have to pay for anything?
  • You do not have to pay for anything to be part of this study
  • We are collecting information that is obtained as “standard of care”, that is, information collected from every pregnant women with LQTS or whose husband has LQTS

How long does the study go on?

  • If the baby has not yet been born, study participation begins when you enroll and ends when you report to us whether or not the baby has LQTS
  • If you already have children, study participation begins when you enroll, and ends when you have reported all the information about the baby/child/children to us

I am interested in hearing more and possibly enrolling in the study. What should I do?

  • Go to the “Contact Us” portion of the webpage and contact us!
  • You can call us, email us or give us your phone and email and we will contact you
  • You can ask for information and not participate in the study
  • We will not contact you unless you want us to

Who will see my information?

  • We take your confidentiality very seriously
  • Once you have signed a consent form to participate in the study, you become anonymous and identified by a number.
  • Only the principal investigators (Dr. Cuneo) know the identity of the numbers, and that information is in a password protected document known only to Dr. Cuneo

What will happen to the information you collect from me?

  • The information from all the participants (none of whom will be able to be identified) will be analyzed
  • The results will be presented in scientific meetings and published in a scientific journal.
  • Again, there will be no way to identify with you from the information presented
  • If you desire, we will share our results with you. Just contact us