Genetics of Neonatal Encephalopathy Study

This study at Boston Children's Hospital is looking at the genetic causes of neonatal encephalopathy (NE), a brain disorder in newborns. Researchers want to understand how genetic factors might explain why NE affects people differently. They are looking for children under 6 years old who have been diagnosed with NE at Boston Children's Hospital and do not already have a known genetic cause for their condition. The goal is to identify specific genetic changes that contribute to NE, which could lead to better diagnosis and care. This study is observational, meaning it will involve looking at information already available or collected without giving any new treatments.

Study design
This is an observational study aiming to enroll 300 participants. It is not a drug trial and does not involve different treatment groups.
What's involved
Not specified in the trial record.
Compensation
Not stated in the trial record.
Follow-up
The study will measure diagnostic yield (how often a genetic cause is found) at 10 years.

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NCT07165938

Genetics of Neonatal Encephalopathy and Related Disorders

Recruiting
Not specifiedAll AgesObservational
Boston Children's Hospital
~300 participants
Updated 2026-03-11 on ClinicalTrials.gov

At a glance

Recruiting sites
1 of 1 listed site is recruiting right now
RecruitingSuspended, closed, or not yet open
What they're measuring
Diagnostic yield
Measured over 10 years
Neonatal Encephalopathy
Hypoxic Ischaemic Encephalopathy (HIE)
1 sites across 1 states
Massachusetts1

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Eligibility criteria

Inclusion

Diagnosed with neonatal encephalopathy during the neonatal period as documented in the electronic medical record
Less than 6 years old at the time of study enrollment
Patient at Boston Children's Hospital

Exclusion

Genetic cause of NE already identified
Deceased prior to enrollment
  • Diagnostic yield10 years

    The diagnostic yield of genomic sequencing will be calculated as the percentage of enrolled participants with NE who receive a genetic diagnosis.