OPEN SUDC RESEARCH STUDIES

The SUDC Coalition strives to connect SUDC families with current research opportunities.

 While the opportunities may be limited we are dedicated to bringing new research to those affected by Sudden Unexplained Death in Childhood.  Contact us for more information.

Already enrolled in a study?  No problem!  Enrolling in multiple studies is simple and beneficial to SUDC research.  Some studies allow you to enroll your entire family for genetic sequencing, where some do not.  Other studies offer complete genome sequencing where some offer exome sequencing.  With more participation, more answers are possible.

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ROBERT'S PROGRAM
BOSTON CHILDREN'S HOSPITAL

Robert’s Program uses translational science to shed light and counsel families in the aftermath of sudden unexplained deaths in their young children.

Clinical mission

To provide comprehensive clinical care to families that have suffered the sudden and unexpected death of a child , including:

  • Evaluating Sudden Unexpected Death in Pediatrics (SUDP) as an undiagnosed disease with an independent, cutting edge approach

  • Contributing expertise and resources to the medical examiner’s investigation of your child

  • Providing risk assessment and genetic counseling for the family, including other children

  • Bereavement support throughout the process

Our efforts are devoted especially to children under the age of three who have died due to natural causes

Research mission

We perform state-of-the-art research into sudden unexpected death in pediatrics to understand fatal underlying vulnerabilities in children and prevent them. Our research extends to: 

  • SIDS- Sudden Infant Death Syndrome

  • SUID - Sudden Unexpected Infant Death

  • SUDC - Sudden Unexplained Death in Childhood

  • SUDEP - Sudden Unexplained Death in Epilepsy

  • “Unexplained” SCDY - Sudden Cardiac Death in the Young

Scientist

VANDERBILT CARDIAC CLINICAL STUDY

This multisite study, that began in 2016, is an NIH funded study into Sudden death in the Young (SDY).  Their focus is to investigate the genetic causes (cardiac focused) of unexplained sudden death in the young.  www.sdyregistry.org 

Study reviews medical records, autopsy results, genetic sequencing, and family evaluation as indicated. 

PI: Prince Kannankeril, MD, Peds Cardiology

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SUDC REGISTRY & RESEARCH COLLABORATIVE

The Purpose of the SUDC Registry and Research Collaborative is...

The purpose is to increase the understanding of the characteristics, circumstances, medical histories and pathologies of children from ages 11 months through 18 years who have died suddenly and unexpectedly, and in some instances, without explanation. The SUDC Registry and Research Collaborative analyzes cases of sudden unexpected deaths in these children to understand risk factors and causes, and develop preventative measures.

The SUDC Registry and Research Collaborative will...

  • Review the child’s death, medical and family history by our study pathologists (including forensic, pediatric, cardiac and neuropathologists) to determine whether a possible, probable or definite cause of death can be identified and pursue additional studies when indicated to assist in determining a specific cause of death.

  • Perform neuroimaging and neuropathology evaluations as well as genetic analysis (whole exome sequencing platform) on the child who died. Additional genetic analyses will be undertaken for biological parents and symptomatic family members. 

  • Study the risks that lead to sudden deaths in children.

  • Provide families with a review of their child’s death through a case review report.

  • Identify at-risk individuals with the hopes of gaining knowledge to establish prevention strategies to reduce the chances of sudden unexplained death in the future.

 

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