NYU Langone’s Sudden Unexplained Death in Childhood Registry and Research Collaborative (SUDCRRC) invites families to enroll in our critical research. Study criteria and participation information are below.

Study Criteria

Parents or guardians of a child aged 1 month through 18 years who has died suddenly and unexpectedly where (1) the preliminary cause of death is undetermined, and the brain has been retained or (2) the final cause of death is unexplained or unclear occurring in the United States or internationally with medical records in English. (If the child is less than 11 months old and the death occurred during sleep, the investigation must show a safe sleep environment and minimal risk of asphyxia.)

The study excludes cases of apparent suicide, apparent homicide, or accident where the external cause was the obvious and only reason for death.

This study is approved by NYU Langone Health’s Institutional Review Board (i14-01061). For any questions regarding whether a specific case satisfies enrollment criteria or not, please contact us at SUDCRRC@NYULangone.org or 646-754-2230.

In 2024, we began to include the investigation of videos of febrile seizures in living children. For those interested in sharing this information about your child, learn more about helping us understand febrile seizures.

How to Refer a Case

Families can refer themselves for enrollment by contacting us at SUDCRRC@NYULangone.org or 646-754-2230.

Professionals interested in referring a bereaved family to the SUDCRRC should confirm research interest with the parents or legal guardians in advance of referral. Upon receiving the next of kin contact information and confirming inclusion criteria, the study team will contact the family and obtain written informed consent for study enrollment.

Pathologists and other professionals are not responsible for obtaining consent from families for enrollment. The study team will complete all aspects of the consenting process.

Records and Specimens for Study Participation

The study provides all shipping supplies, prepaid shipping labels, and reimbursements for costs incurred to provide the materials below:

• medical records
• autopsy report, death scene investigation report and photos, and ancillary study reports
• biospecimens (including but not limited to blood, vitreous fluids, tissue, microbiome specimen, organ or blood spot cards); a viable genetic sample such as a fresh liver specimen in our genetic kit, which preserves DNA and RNA, whole blood (ideally in ethylenediaminetetraacetic acid), or extracted DNA. If none of these are available, consult with study team member to address.
• histology slides (hematoxylin and eosin stained)
• X-rays and photographs
• whole brain fixed in formalin for two weeks (if retained and available)

Death investigation agencies can obtain study-related shipping kits with prepaid shipping labels prior to case referral. These include central nervous system specimen kits, genetic specimen kits, slide shipping kits, dry ice kits, and insulated shipping kits. To request free supplies, contact us at SUDCRRC@NYULangone.org or 646-754-2230.

Results Returned to Medical Examiner or Coroner and Additional Resources

The following information will be returned to the medical examiner or coroner:

• whole exome sequencing (more than 20,000 genes) report after genetic counseling and referrals for families as clinically indicated
• SUDCRRC multidisciplinary case review report

Additional professional resources are available.