LQTS Seminar 2019
LQTS Patients and Families Seminar
Celebrating 40 Years of the International LQTS Registry
The International LQTS Registry was established in 1979 and on September 21, 2019 we held a seminar for patients and families to celebrate 40th anniversary of our Registry. For the last 40 years, LQTS patients and their families contributed with very important data to the registry allowing us to advance the field of LQTS research on diagnosis, genetics, and clinical management of this inherited arrhythmia disorder. The seminar was well attended with over 50 LQTS patients or their family members learning from several lectures by Rochester faculty and participating in vigorous discussions. Questions about diagnosis, genetics, clinical testing, risk assessment, optimal management, therapy and prevention were empowering and motivating our team to further pursue new research goals to alleviate challenges of this disease. The agenda of the seminar with specific talks and respective slides is provided below.
- Welcome and Introductions Wojciech Zareba MD, PhD Video
- Clinical Cardiovascular Research Center (CCRC) Ilan Goldenberg, MD Video Slides
- 40 years of the LQTS Registry – Dr. Arthur Moss (1931-2018) and his Legacy Wojciech Zareba MD, PhD Video Slides
- Update on the Long QT syndrome – scientific output of the Registry Ilan Goldenberg, MD Video Slides
- LQTS Registry – How does it work? Kris Cutter, MS Video Slides
- Children with LQTS Jeffrey Vinocur, MD Video Slides
- Sport Activities in LQTS Spencer Rosero, MD Video Slides
- LQTS Patients’ Perspective Video
- Therapies in LQTS Spencer Rosero MD Video Slides
- Drugs prolonging QT Wojciech Zareba MD, PhD Video Slides
- Pregnancy in LQTS Ilan Goldenberg, MD Video Slides
- Why genetic testing is important Ilan Goldenberg, MD Video Slides
- Implanted Cardioverter Defibrillators (ICDs) and Automatic External Defibrillators (AEDs) – Patient 101 David Huang, MD Video Slides
- Therapies of the Future Wojciech Zareba MD, PhD Video Slides
University of Rochester Faculty for the Seminar:
Wojciech Zareba MD, PhD |
Ilan Goldenberg, MD |
Kris Cutter, MS |
Jeffrey Vinocur, MD |
Spencer Rosero, MD |
David Huang, MD |
Bonnie MacKecknie |
Rebecca Horn |