Pregnancy and Long QT Syndrome Study

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About the Study:

  • This is a multi-center, international observational study.
  • There are 2 parts to the study, and you can enroll in one or both
  • In the first part of the study, we look back at the heart rates of your children before they were born. This is called a retrospective study
  • In the second part of the study, we look forward at the heart rates of your unborn baby while he/she is still in the womb.  This is called a prospective study
  • If you are currently pregnant AND have this is not your first child,  you can enroll in both
  • In both studies, we also ask for results of genetic testing (LQTS positive or negative) of your children

Study Goals:

  • After birth, LQTS syndrome can be suspected by symptoms, an abnormal electrocardiogram and a blood test (genetic testing)
  • Before birth, it is very difficult to detect LQTS because most of the babies will have a ‘slower than normal’ heart rate,  often not thought to be abnormal.
  • In our study we would like to use the heart rate of babies before they are born to distinguish babies with LQTS from babies who do not have LQTS
  • And we would like to determine if the heart rates of babies with different types of LQTS  are different from each other before they are born
  • If before the baby is born, he/she he develops bad heart rhythms we can treat the bad rhythms and  and plan for the best care of the baby after birth

Who can participate:

  • We are recruiting women and men with LQTS1, LQTS2 or LQTS3 who either have had children in the last 5 years OR pregnancies with an LQTS positive mother or father
  • If you are LQTS positive and  thinking about becoming a mother or a father you can still contact us as this study will go on for about 5 years
  • If you are not of child bearing age, you can encourage younger (or older)  LQTS positive family members to contact us

Study Plan:

  • If  you are interested in hearing more, Contact Us
  • If you are interested in participating, we email/fax/snail-mail you the consent form
  • We explain and go over the consent form with you by land-line/cell phone/facetime/skype.
  • If you agree to participate, you sign and date the consent and send back to us
  • We assign you a number in our database
  • If you are participating in the retrospective study (you already have children age 5 years or younger) Contact your OB care provider ask him/her to send you the records of your pregnancy, specifically
    • The baby’s  heart rates and gestational ages at which the heart rates were measured
    • LQTS type (1, 2, or 3) and the specific mutation (from your genetic testing)
    • Genetic test results of your children
  • If you are participating in the prospective study (you are currently pregnant)
  • We will send you a letter to give to your OB care provider telling him about the study, and ask you to send us:
    • The baby’s heart rates that your OB care provider measures during your routine visits and the gestational age at the time of the measurement
    • The baby’s heart rates and gestational age measured during ultrasounds
    • The baby’s ECG after birth
    • Genetic test results of your baby
  • If you are participating in both the prospective and retrospective parts of the study, Do both!

Enrolling in the study

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