Pregnancy and Long QT Syndrome

Fetal Long QT Syndrome

PI: Bettina Cuneo, MD

  • 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

Learn more…(BROKEN LINK)

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