Status:

COMPLETED

NICUSeq: A Trial to Evaluate the Clinical Utility of Human Whole Genome Sequencing (WGS) Compared to Standard of Care in Acute Care Neonates and Infants

Lead Sponsor:

Illumina, Inc.

Collaborating Sponsors:

Le Bonheur Children's Hospital

Rady Pediatric Genomics & Systems Medicine Institute

Conditions:

Rare Diseases

Eligibility:

All Genders

1-120 years

Phase:

NA

Brief Summary

Prospective, multi-site, study to evaluate the clinical utility of cWGS in a proband. One group will receive cWGS and a clinical report approximately 15 days after blood samples are received, while th...

Detailed Description

This is a prospective, multi-site, randomized study to evaluate the clinical utility of cWGS in each proband. Throughout this study, each proband will receive SOC testing as determined by the site cli...

Eligibility Criteria

Inclusion

  • Proband Inclusion Criteria
  • Current admission in a Neonatal Intensive Care Unit/Intensive Care Unit at a participating clinical site at the time of enrollment from day of life 0 to 120 days
  • A suspected genetic etiology of disease, based on objective clinical findings or other phenotypic defects for which a genetic test would be considered
  • Must be able to have 1 - 1.25 ml tube of whole blood drawn for testing
  • One parent of the proband must be able to provide written informed consent
  • At least one biological parent must agree to participate and provide at least 4 ml of whole blood for testing
  • Exclusion Criteria:
  • Proband Exclusion Criteria
  • Known non-genetic cause(s) of disease, disorder, or phenotypic defect
  • The phenotype is fully explained by complications of prematurity
  • Trisomy 13, 18 or 21 or Turner Syndrome is the likely diagnosis; such a proband will be eligible if a diagnostic karyotype is normal
  • Blood transfusion within 48 hours (each proband will be re-eligible 48 hours after the most recent transfusion)
  • The PI decides that the study is not in the best interest of the proband (for example, the neonate or infant is at a high risk of severe morbidity or mortality within the next 7 days and these risks could be mitigated by alternative testing). Subsequent eligibility for enrollment of each proband is at the discretion of the site PI.

Exclusion

    Key Trial Info

    Start Date :

    September 14 2017

    Trial Type :

    INTERVENTIONAL

    Allocation :

    ACTUAL

    End Date :

    January 13 2020

    Estimated Enrollment :

    355 Patients enrolled

    Trial Details

    Trial ID

    NCT03290469

    Start Date

    September 14 2017

    End Date

    January 13 2020

    Last Update

    November 18 2020

    Active Locations (5)

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    Page 1 of 2 (5 locations)

    1

    Rady's/Children's Hospital of Orange County

    Orange, California, United States, 92868

    2

    Washington University in St. Louis School of Medicine & St. Louis Children's Hospital

    St Louis, Missouri, United States, 63110

    3

    University of Nebraska Medical Center & Children's Hospital

    Omaha, Nebraska, United States, 68114

    4

    Children's Hospital of Philadelpia

    Philadelphia, Pennsylvania, United States, 19104