The 2nd Annual Think Tank on Prevention of Sudden Cardiac Death in the Young: Developing A Rational, Reliable and Sustainable National Health Care Resource

8:00am- 8:20am- Introduction

  • Welcome & Introductions
    • Co-Chairs : Brief statements review of goals of the meeting and the agenda-Theressa Wright, MD (Eli Lilly) (10min)
  • Collaboration, Cardiac Safety & Children: The CSRC View

8:15am-9:00am-Plenary Session

  • Sudden Cardiac Death in the Young – Recap of the Feb. 20, 2015 Think Tank- Salim Idriss, MD PhD (Duke University) (15min)
  • Successes and Lessons Learned from the CHSS/STS database- Eugene Blackstone, MD (Cleveland Clinic) (15min)
  • An example of success: FDA ECG Warehouse- Jose Vicente, MS (FDA) (15min)

9:00am 10:20am- Session I: The Importance of knowing normal.

Moderator: Elizabeth Saarel, MD (Cleveland Clinic)

Moderated Discussion (40min)

10:20am 10:35-Break (15min)

10:35am-12:15pm- Session II: Working Group 1: Screening data collection

Moderator: Stuart Berger, MD (University of California-Davis)Goal: Develop a core uniform screening dataset

  • Current State in US-Prior and current survey results? Stuart Berger, MD (University of California-Davis) (10 min)
  • Screening Group Perspective – Sharon Bates, Anthony Bates Foundation (10min)
  • International Perspective-
    • Naokata Sumitomo, MD (Japan PMDA) (10 min)
    • Dominique Heon, M.D. (Health Canada)


  • Inclusion of echo in core dataset- Nancy Cutler, MD (Beaumont Student Heart Check) (10min)

Moderated Discussion: Moving to a uniform screening dataset (50min)

12:15pm-12:35pm- Working Lunch (20min)

12:35pm- 2:00pm- Session III-Working Group 2: Optimizing Digital Data Collection and Warehousing,

Moderator: Elizabeth Saarel, MD (Cleveland Clinic)

Goal: Define best data collection methods and best universal data formats for warehouse of core screening dataset for following long term outcomes.

Moderated Discussion:  What are the barriers to uniform digital dataset collection and long term storage? (65 min)

2:00pm-2:10pm-Break (10min)

2:10pm -3:00pm- Session IV- How do we address long term outcomes?

Moderator: Mitchell Krucoff

  • Cardiac PerspectiveEugene Blackstone, MD (Cleveland Clinic) (10min)
  • Collaborative translational database platforms: How can we use modern IT to solve the problem of rare diseases like sudden cardiac death in the young?- David Booth, MD (10 min)

Moderated Discussion (30min)

3:00pm-3:30pm – Next steps for action and closing comments

  • Identification of gaps- Salim Idriss, MD, PhD (Duke University Medical Center) and Theressa Wright, MD (Eli Lilly) (15min)
  • Discussion- How to close the gaps: Partnerships & Collaborations (15min)