Clinical Trials Office

Sleep Research Study for Long QT Syndrome Patients

What is the purpose of this study?

The congenital long QT syndrome (LQTS) is a heart disease that tends to occur among family members.  LQTS patients are at increased risk of sudden cardiac (heart) death.  There are three major subtypes, LQT1, LQT2 and LQT3.  About 97% cardiac events in LQT1 patients are related to exercise, emotional stress or swimming.  In contrast, individuals with LQT2 and LQT3 are especially at risk during sleep, about 29% for LQT2 and 39% for LQT3.  Our research is aimed at understanding why LQT2 and LQT3 patients develop heart problems during sleep.

Who can participate?

Children and adults aged 5 years and older with LQTS may be able to participate in this research study.

Ages

  • 5  years old and above

Conditions

  • Adult Studies
  • Cardiology/Heart
  • Sleep

What is involved?

This study lasts for 18 hours and includes single visit. The following is a list of procedures that will take place during the study:

  • Questionnaires
  • Blood tests
  • Electrocardiogram (ECG) and blood pressure measurements
  • Sleep measurements
  • Breathing tests

What are the benefits?

If you agree to allow your child to take part in this research study, your child may not receive a direct medical benefit.  The information learned from this research study may benefit other patients with congenital long QT syndrome in the future.  Clinical studies are essential in finding new and improved treatments and diagnostic tools. 

Will I get all the facts about the study?

Parents will be given a consent form that thoroughly explains all of the details of the study.  The consent form includes all of the procedures, the risks, the benefits, the compensation, who to contact with questions or concerns, and more.  A member of the study staff will review the consent form with you and will be sure that all of your questions are answered.  Study procedures will not begin until the parent or guardian have signed this form and, if of age, the child has given at minimum his/her verbal agreement. 

Who should I contact for more information?

Sarah Doll, study coordinator
Cincinnati Children’s Hospital Medical Center
Pulmonary Medicine, MLC 2021
3333 Burnet Ave., Cincinnati, OH 45229-3039
Phone:  513-803-2221
sarah.doll@cchmc.org

Date

Ongoing