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Groundbreaking New Book Fills Dire Needs in Unexplained Pediatric Deaths

ROSELAND, N.J. -- The SUDC Foundation recently published a first-of-its kind book, "Unexplained Pediatric Deaths: Investigation, Certification and Family Needs" (ISBN: 978-0998904320) a collaboration between the National Association of Medical Examiners (NAME) and the American Academy of Pediatrics (AAP), which establishes the first ever national consensus guidelines in the U.S. to fill crucial needs to determine why unexplained pediatric deaths happen and how to support families after these tragedies.

Each year in the U.S., over 3,000 infants and children who are otherwise apparently healthy, die suddenly and without explanation. These deaths not only have profound effects on families, but also serious implications for our public health system. Currently, no national standards for investigating these deaths exist, severely handicapping our ability to understand and prevent them in the future.

"The devastating loss of a child is compounded when we cannot explain how that precious life ended," said Elizabeth Bundock, M.D., Ph.D., Deputy Chief Medical Examiner for the Office of the Chief Medical Examiner in Burlington, Vermont and one of the editors of the book. "While many of these unexplained deaths expose the limits of our collective medical knowledge, ideally, none should expose shortcomings in our effort to identify the cause of death."

Bundock adds, "The medicolegal investigation of a child death is complex, requiring the meticulous attention of multiple professionals who bring to bear special techniques and resources. Variability in the medicolegal response is inevitable and flexibility is essential. However, the guidance provided in Unexplained Pediatric Deaths can move the U.S. closer to a consistently comprehensive approach."

"Over the last two decades, I have spoken to over 1,000 families who lost seemingly healthy, thriving children suddenly, unexpectedly and most often without answers as to why," said Laura Gould Crandall, Co-founder and President of the Sudden Unexplained Death in Childhood Foundation and one of the authors of the book. "These families deserve better than our current system provides. Without the improvements included in this book, we cannot truly know how many children are dying, we cannot perform the ideal research to understand and prevent them, and we cannot fully support families through their grief. We are so thankful to the authors of this book, especially the lead editors Dr. Elizabeth Bundock and Dr. Tracey Corey, for dedicating their expertise and diligently guiding our collective group of multidisciplinary collaborators to fix a broken system for the betterment of all children."

"This book draws on the experience and insight of dozens of experts from around the country," said Tracey Corey, M.D., Associate Medical Examiner for Florida Districts 5 & 24 and one of the editors of the book. "Each guideline was developed based on extensive research, historical context and sound rationale. Implementing them will advance the way we investigate these deaths, arming us with a system that will help us better determine why these deaths happen and support those we serve."

"This book represents the state-of-the art on our knowledge and assessment of sudden pediatric deaths, representing the cumulative wisdom of leading experts across diverse medical and scientific disciplines," said Orrin Devinsky, M.D., of New York University Langone Health and one of the authors of the book. "The experience of affected parents has greatly strengthened the value and sensitivity of this extraordinary effort."

"Unexplained Pediatric Deaths: Investigation, Certification and Family Needs" establishes the first national consensus guidelines to address the shortfalls in our current death investigation system. It outlines procedural guidance for a comprehensive investigation and autopsy and provides guidance to promote consistent classification of unexplained pediatric deaths, which greatly impacts our ability to understand how often they occur. It also offers recommendations for the care of families after such tragedies. Adoption of these guidelines is critical to achieve a better understanding of these deaths, successful public health prevention strategies and appropriate care of the bereaved.

"Unexplained Pediatric Deaths" began when the SUDC Foundation awarded a grant to NAME to work in collaboration with the AAP to convene an expert panel to identify and discuss these critical issues. The publication is a combined effort of a panel of medical examiners, pediatricians and federal agency representatives who represent the diverse interests of epidemiology, death investigation, autopsy performance, death certification, clinical subspecialties (neurology, cardiology, child abuse, injury prevention, infectious diseases, genetics and metabolic diseases), family needs, prevention and research.

To read a more detailed summary, please visit: https://sudc.org/education-resources/media-resources.

To learn more about the book and view a full list of authors available for interviews throughout the U.S., please visit https://sudpeds.com/.

About the SUDC Foundation:

The SUDC Foundation is the only organization worldwide whose purpose is to promote awareness, advocate for research and support those affected by SUDC. The SUDC Foundation provides all services at no cost to families. SUDC is a category of death in children over the age of 1 year which remains unexplained after a thorough investigation and autopsy.

To learn more about SUDC and the SUDC Foundation, please visit https://sudc.org/.

Media Contact:
Stephanie Zarecky
The SUDC Foundation
stephanie@sudc.org

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*Photo caption: Book jacket, "Unexplained Pediatric Deaths: Investigation, Certification and Family Needs" (ISBN: 978-0998904320).

Related link: https://sudc.org/

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SUDC Foundation Awards Grant to AAP and NAME to Establish National Guidelines for the Investigation of Sudden Deaths of Children

CEDAR GROVE, N.J. -- The SUDC Foundation, the only organization worldwide dedicated to sudden unexplained death in childhood (SUDC), has awarded nearly $100,000 to the National Association of Medical Examiners (NAME) to work collaboratively with the American Academy of Pediatrics (AAP) to investigate and establish national practice guidelines surrounding the investigations of sudden unexpected deaths in infants and young children, to determine research needs and the sensitive care of families affected.

The death of a child has profound effects on families and serious implications for our public health system particularly when the death is sudden and unexpected in an apparently healthy infant or child. While causes of these pediatric deaths are numerous and span natural disease, accidents and deaths due to abuse, many are not fully explained despite current efforts.

"No formal standards exist today that delineate the roles of those tasked with the death investigation of a child who dies suddenly, unexpectedly, and without an obvious cause," said Brian Peterson, MD, President of NAME. "We aim to change this by introducing evidence-based protocols that create uniformity and consistency in investigative procedures nationwide."

For the "Sudden Death in Pediatrics: Consensus for Investigation, Certification, Research Direction and Family Needs" project, NAME and AAP will work together to address these issues, leveraging their respective resources, expertise, and reputations. NAME and the AAP are also working collaboratively to revise the AAP policy statement, "Distinguishing Sudden Infant Death Syndrome."

"Although this task has been attempted by smaller groups in the past with limited success, we are confident that our strategic collaboration is set up for success because it is based on each organization's strong commitment to carry out a common mission," said Dr. Peterson of NAME.

"The death of an infant or child is devastating to all those involved. The SUDC Foundation is proud to support this amazing project that will help us better understand these tragedies, improve our surveillance of them, lead to prevention strategies and best support those most personally affected," said Laura Crandall, MA, President and Executive Director of the SUDC Foundation."

"As pediatricians who are dedicated to caring for children and preventing illness and injury, the death of any child is heartbreaking," said Vincent Palusci, MD, FAAP, member of the Executive Committee of the AAP Section on Child Abuse and Neglect. "Many pediatricians participate in community activities such as child death review to help understand the causes of sudden, unexpected deaths, and to identify ways to prevent them. The AAP is proud to be working with NAME to address these important issues and prevent further deaths."

The Sudden Death in Pediatrics project will commence this month to create an expert panel review of sudden and unexpected deaths in pre-pubescent children. This panel, identified by NAME and AAP, will be composed of professionals from various disciplines and settings representing the interests of death investigation, autopsy performance, certifications, genetic/metabolic testing, legal issues, and family needs. All panel members will be active in the practice of medicine in the field of sudden death in infants and children. Invitations to participate will also be issued to the Centers for Disease Control (CDC) and the National Institutes of Health.

According to the Centers for Disease Control and Prevention, in 2015, about 2800 infants and 400 children died without a clear cause being identified after investigation. Sudden Unexplained Infant Death/Sudden Infant Death Syndrome (SUID/SIDS) and SUDC are age-based terms sometimes used to describe the sudden death of an infant or child which remains unexplained after a thorough case investigation is conducted and other possible causes have been ruled out. They may also be categorized as "undetermined". SUID/SIDS are used to describe deaths less than 12 months of age, and SUDC used for deaths on or after a child's first birthday.

About the SUDC Foundation:
The SUDC Foundation is devoted solely to the needs of professionals and families touched by the unexpected death of a child aged 12 months or older. Since its inception, the non-profit Foundation has funded crucial research, helped hundreds of families in over 16 countries, and led many advocacy efforts, including the successful passage of the Sudden Unexpected Death Data Enhancement and Awareness Act, which was signed into law by President Obama in December 2014. For more information, visit https://sudc.org/ and follow us on Twitter @SUDC.

About the American Academy of Pediatrics:
The American Academy of Pediatrics is an organization of 66,000 primary care pediatricians, pediatric medical subspecialists and pediatric surgical specialists dedicated to the health, safety and well-being of infants, children, adolescents and young adults. For more information, visit https://www.aap.org/ and follow us on Twitter @AmerAcadPeds.

About the National Association of Medical Examiners:
The National Association of Medical Examiners (NAME) is the national professional organization of forensic pathologists, physician medical examiners, medical death investigators and death investigation system administrators who perform the official duties of the medico-legal investigation of deaths of public interest in the United States. NAME was founded in 1966 and currently has over 1000 members. For more information, visit us at: http://www.thename.org/.

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