The National Heart, Lung, and Blood Institute (NHLBI) convened a Working Group meeting on May 20, 2016 in Bethesda, MD to identify research barriers and outline possible solutions to prevent sudden cardiac death (SCD) in the general population with the establishment of short and long-term goals. The Working Group consisted of experts in pediatric and adult cardiology, emergency care medicine, cardiac electrophysiology, neurology, and pathology as well as in epidemiology, biostatistics, and the establishment and use of cardiac arrest registries.
The workshop was responsive to NHLBI Strategic Plan Goals 1 & 2 and the Division of Cardiovascular Diseases Strategic Plan Goal 2.3.a.
Sudden cardiac death (SCD) has a devastating impact on the families of victims and society as a whole. Despite major advances in the treatment and prevention of coronary heart disease (CHD) and the advent of implantable cardioverter defibrillators (ICD) for SCD prevention in high-risk patients, declines in SCD rates have not paralleled those for other outcomes. The majority of SCDs (~300,000 per year) do not occur in high-risk populations currently targeted for ICD therapy, but occur in the general population in which over half the individuals suffering an SCD do not have known heart disease at the time of the event. Thus, the working group unanimously agreed that there is an urgent need to develop effective preventive strategies for the general population. The group considered the obstacles to SCD prevention in the general population, many of which stem from the statistical reality that, although accounting for the majority of SCDs, SCD is a rare event in the general population (less than ~one in 1,000 Americans every year). Therefore, large populations and/or study samples with SCD endpoints are required to further SCD prevention research in the general population. Acquiring such large samples has been hampered by the lack of a uniform definition for SCD that can be applied across disciplines and study types, and the absence of uniform and widely utilized population-based SCD surveillance systems. Discussion focused on the creation of uniform definitions of SCD and subtypes that could be employed across all study types and within electronic health records, as well as the specific data elements that would be required to define and capture SCD and its sub-types in large populations. With adequate capture of uniformly defined SCD and subtypes, identification and quantification of causes will allow prevention strategies to be tested and implemented at the primary prevention level.
Another major hurdle identified by the working group was the knowledge gap regarding the heterogeneous pathophysiologies and mechanisms underlying SCD in the general population, which partly stems from the lack of autopsy data and information regarding circumstances and precipitants at the time of death. The group also considered the development and use of new scalable sensor technologies that could be utilized to better characterize precipitants of SCD and its underlying mechanisms.
The Working Group made several recommendations to address the identified knowledge gaps and barriers in the prevention of SCD in the general population.
- To facilitate making SCD a uniformly reportable condition, develop a standard, common lexicon for SCD that includes standardized reporting methods, death certificates with required data elements, and post-mortem examinations to permit the accumulation of sufficient numbers of well characterized deaths and the circumstances surrounding them.
- Support the ascertainment and confirmation of SCD events and their sub-types through the collection of standard SCD data elements in existing and new data sets; e.g., in NHLBI-supported clinical trials and observational studies, clinical trial networks, the Precision Medicine Initiative, and PCORnet Centers.
- Create opportunities for collaborative analyses of SCD datasets to arrive at sizeable numbers of SCD sub-phenotypes both to minimize underlying heterogeneity for genomic and biologic marker studies and to arrive at targeted preventive approaches in subpopulations.
- Establish an SCD registry in adults, similar to the Sudden Death in Young Case Registry. This could include an autopsy element, hospital-based and EMS-based information, as well as supplemental data from next of kin and patients who survive.
- Facilitate the development, validation, and implementation of scalable, easy-to-use sensors (devices) to better identify risk factors for and triggers of SCD/SCA.
The Working Group committee will develop a report of the meeting for publication in an appropriate professional journal.
Division of Cardiovascular Sciences
Debra Egan, MSc, MPH
Division of Cardiovascular Sciences
Working Group Members
- Christine Albert, MD, MPH, Harvard University
- Robert A. Berg, MD; University of Pennsylvania
- Mercedes Carnethon, PhD; Northwestern University
- Sumeet Chugh, MD; University of California, Los Angeles
- Rajat Deo, MD, MTR; University of Pennsylvania
- Sam P. Gulino, MD; City of Philadelphia Department of Public Health
- Jeffrey Olgin, MD; University of California at San Francisco
- Nona Sotoodehnia, MD; University of Washington
- Zian H. Tseng, MD, MAS; University of California at San Francisco
NHLBI Planning Staff
- Kristin M. Burns, MD
- Debra Egan, MSc, MPH
- Yi-Ping Fu, PhD
- Jonathan R. Kaltman, MD
- David A. Lathrop, PhD
- Albert Lee, PhD
- Paul D. Sorlie, PhD
- Gina S. Wei, MD, MPH
- Walter J. Koroshetz, MD