NCT05361070Active, not recruiting
Neonatal Seizure Registry, GEnetics of Post-Neonatal Epilepsy
Neonatal Seizure Registry, GEnetics of Post-Neonatal Epilepsy (NSR-GENE)
Source: ClinicalTrials.gov · Last updated 5 Feb 2026
Brief summary (registry, in English)
The NSR-GENE study is a longitudinal cohort study of approximately 300 parent-child trios from the Neonatal Seizure Registry and participating site outpatient clinics that aims to evaluate whether and how genes alter the risk of post-neonatal epilepsy among children with acute provoked neonatal seizures. The researchers aim to develop prediction rules to stratify neonates into low, medium, and high risk for post-neonatal epilepsy based on clinical, electroencephalogram (EEG), magnetic resonance imaging (MRI), and genetic risk factors.
- Status (registry)
- Active, not recruiting
- Study type
- Observational
- Enrollment
- 300 (estimated)
- First submitted
- 29 Apr 2022
- Start date
- 9 Aug 2022
- Primary completion date
- 28 Feb 2027
- Lead sponsor
- University of California, San Francisco
- NCT number
- NCT05361070
What you commit to
- Study type: Observational
- Planned participants: 300
- From 9 Aug 2022 to the primary completion date, 28 Feb 2027
- 8 sites in 1 country
- Visits and tests: ask the trial team, the registry does not list them
Built from the registry fields of ClinicalTrials.gov. It describes the study, not your situation.
Who cannot take part
Copied verbatim from ClinicalTrials.gov and grouped by topic. Only the trial team decides who can take part.
Other illness
- Risk for adverse outcome independent of seizures and underlying brain injury (including but not limited to inborn errors of metabolism, fetal infection, brain malformation)
- Transient cause for seizures (e.g., hypoglycemia without brain injury, hyponatremia, hypocalcemia)
- Neonatal-onset epilepsy syndromes
Other
- Deceased
Who the study is looking for
- Children \< 44 weeks postmenstrual age at seizure onset
- Seizures due to an acute provoked cause (including, but not limited to HIE, ischemic stroke, or intracranial hemorrhage)
- Parent(s) who are English or Spanish literate (with interpreter)
- Birthdate between 3/1/2023 and 1/1/2011
- One biological parent willing to participate
- Enrolled in NSR-II
- Fulfilling all NSR-II eligibility criteria and evaluated at an NSR center for neonatal seizures or enrolled in NSR-RISE
Sex: All · Does not accept healthy volunteers
Sites (8)
Sites in registry order. Pick your city on the disease page to sort them by distance.
| Site | City | Country | Site status |
|---|---|---|---|
| University of Michigan Coordinator of this site? Confirm its status | Ann Arbor | United States | Unknown status |
| Boston Children's Hospital Coordinator of this site? Confirm its status | Boston | United States | Unknown status |
| Massachusetts General Hospital Coordinator of this site? Confirm its status | Boston | United States | Unknown status |
| Cincinnati Children's Hospital Medical Center Coordinator of this site? Confirm its status | Cincinnati | United States | Unknown status |
| Duke University Coordinator of this site? Confirm its status | Durham | United States | Unknown status |
| Children's Hospital of Philadelphia Coordinator of this site? Confirm its status | Philadelphia | United States | Unknown status |
| University of California San Francisco Coordinator of this site? Confirm its status | San Francisco | United States | Unknown status |
| Children's National Medical Center Coordinator of this site? Confirm its status | Washington D.C. | United States | Unknown status |
This page is information, not medical advice. Discuss any trial with your doctor.