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Enrolling by invitationNCT07564297Updated Aug 18, 2026

North American Fetal Therapy Network Prospective Registry for Long-term Outcome Following Fetoscopic Endoluminal Tracheal Occlusion in Severe Left and Right Congenital Diaphragmatic Hernia

An observational study in Congenital Diaphragmatic Hernia, sponsored by Mayo Clinic. Enrolling by invitation at 1 site in United States. Open to female participants aged 18 Years to 50 Years. Per ClinicalTrials.gov, last updated 2026-08-18.

Sponsored by Mayo Clinic · Observational

Study type
Observational
Model
Case-control
Time perspective
Prospective
Enrollment
80
Ages
18 Years to 50 Years
Sex
Female
01

Study summary

The purpose of this research is to determine if babies who undergo a Fetoscopic Endoluminal Tracheal Occlusion (FETO) procedure survive more often and have less long-term complications than babies who have similarly severe Congenital Diaphragmatic Hernia (CDH) that have not had the FETO procedure performed during pregnancy

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Conditions studied

  • Congenital Diaphragmatic Hernia
03

Who can participate

Ages eligible
18 Years to 50 Years
Sexes eligible
Female
Accepts healthy volunteers
No
Sampling method
Non-probability sample

Study population

Pregnant patients with fetuses affected by congenital diaphragmatic hernia meeting the inclusion criteria above-mentioned and not meeting exclusion criteria.

Inclusion criteria

  • Singleton pregnancy
  • Normal fetal karyotype with confirmation by culture results, CMA with non-pathological variants, WES or WGS. Results by fluorescence in situ hybridization (FISH) will be acceptable if the patient is > 26 weeks
  • Gestational age at enrollment prior to 29 6/7 weeks
  • Intrathoracic liver herniation Isolated left CDH with O/E LHR \< 30% at enrollment (18 0/7 to 29 5/7 weeks.) Isolated right CDH with O/E LHR \< 45% at enrollment (18 0/7 to 29 5/7 weeks).
  • Cervical length by transvaginal ultrasound > 20 mm within 24 to 48 hours prior to FETO procedure
  • Patient meets psychosocial criteria
  • Informed consent understood

Exclusion criteria

Exclusion Criteria:

  • Multi-fetal pregnancy
  • History of natural rubber latex allergy
  • Preterm labor, cervix shortened (\<20 mm at enrollment or within 24 to 48 hours of FETO balloon insertion procedure) or uterine anomaly strongly predisposing to preterm labor, placenta previa
  • Psychosocial ineligibility, precluding consent:

    • Inability to reside within 30 minutes of Mayo Clinic. and inability to comply with the travel for the follow-up requirements of the trial
    • Patient does not have a support person (e.g., spouse, partner, mother) available to stay with the patient for the duration of the pregnancy at Mayo Clinic.
  • Bilateral CDH, isolated left sided CDH with O/E LHR 30% (measured at 180 to 295 weeks), isolated right sided CDH with O/E LHR > 45% (measured at 180 to 295 weeks), as determined by ultrasound.
  • No intrathoracic liver herniation
  • Additional fetal anomaly and chromosomal abnormalities, associated anomalies recognized to alter survival prognosis (i.e., congenital heart disease) or presence of an underlying genetic syndrome (i.e., Fryns) by ultrasound, MRI, or echocardiogram at the fetal treatment center.
  • Maternal contraindication to fetoscopic surgery or severe maternal medical condition in pregnancy
  • History of incompetent cervix with or without cerclage
  • Placental abnormalities (previa, abruption, accreta) known at time of enrollment
  • Maternal-fetal Rh isoimmunization, Kell sensitization or neonatal alloimmune thrombocytopenia affecting the current pregnancy
  • Maternal HIV, Hepatitis-B, Hepatitis-C status positive because of the increased risk of transmission to the fetus during maternal-fetal surgery. If the patient's HIV or Hepatitis status is unknown, the patient must be tested and found to have negative results before enrollment
  • Uterine anomaly such as large or multiple fibroids or Mullerian duct abnormality
  • There is no safe or technically feasible fetoscopic approach to balloon placement
  • Participation in another intervention study that influences maternal and fetal morbidity and mortality or participation in this trial in a previous pregnancy
04

Study design

Observational model
Case-control
Time perspective
Prospective
Enrollment
80 participants (estimated)
Patient registry
No

Groups and cohorts

  • FETO Surgery

    Device: Fetoscopic Endoluminal Tracheal Occlusion

  • Standard of Care

    Other: Standard of Care

Interventions

  • DeviceFetoscopic Endoluminal Tracheal Occlusion

    Mothers who chose to undergo a Fetoscopic Endoluminal Tracheal Occlusion procedure for severe left and right congenital diaphragmatic hernia will be followed until the infant is 2 years of age.

  • OtherStandard of Care

    Mothers who chose to receive expectant management for severe left and right congenital diaphragmatic hernia will be followed until the infant is 2 years of age.

05

What researchers measure

Primary outcomes

  1. Number of FETO procedure complications

    FETO procedure complications are defined as device dislodgement, intraoperative injury to fetus, procedural hemorrhage, post-procedural hemorrhage, preterm delivery, chorioamnion separation, chorioamnionitis, polyhydramnios, oligohydramnios, failed percutaneous or fetoscopic removal requiring cesarean section or EXIT procedure for removal, neonatal death due to asphyxia (if delivery before FETO removal), non-reassuring fetal heart rate monitoring.

    Time frame: 2 years

  2. Neonatal survival to discharge

    Number of neonates to survive from delivery to hospital discharge

    Time frame: 2 years

Secondary outcomes

  1. Presence of pulmonary hypertension

    Number infants to be diagnosed with pulmonary hypertension. Pulmonary hypertension is a determination of the ratio of the tricuspid regurgitation jet (estimation of the right ventricular systolic pressure) to systemic blood. Will be record as absent/none, systemic or suprasystemic

    Time frame: 6, 12, 18, and 24 months of age

  2. Need for supplemental oxygen

    Number of infants to require supplemental oxygen

    Time frame: 6, 12, 18, and 24 months of age

  3. Periventricular leukomalacia at < 2 months postnatally

    Number of infants to be diagnosed with periventricular leukomalacia at \< 2 months postnatally

    Time frame: 2 months

  4. Intraventricular hemorrhage (grade 0-III)

    Number of infants to be diagnosed with intraventricular hemorrhage (grade 0-III)

    Time frame: 6, 12, 18, and 24 months of age

  5. Retinopathy of prematurity (grade 3 or higher)

    Number infants to be diagnosed with retinopathy of prematurity (grade 3 or higher)

    Time frame: 6, 12, 18, and 24 months of age

  6. Gastro-esophageal reflux

    Number of infants to be diagnosed with gastro-esophageal reflux

    Time frame: 6, 12, 18, and 24 months of age

  7. Number of infant hospital readmissions

    Number of infants readmitted to hospital after initial discharge

    Time frame: 6, 12, 18, and 24 months of age

  8. Childhood growth failure

    Number of infants to experience childhood growth failure: weight gain velocity or decline \>2 in weight, for length Z score.

    Time frame: 6, 12, 18, and 24 months of age

  9. Recurrence of Congenital Diaphragmatic Hernia (CDH) repair

    Number of infants to require additional congenital diaphragmatic hernia (CDH) repair procedures.

    Time frame: 6, 12, 18, and 24 months of age

  10. Bowel obstruction

    Number of infants to experience a bowel obstruction.

    Time frame: 6, 12, 18, and 24 months of age

  11. Neurodevelopmental delay

    Number of infants to experience neurodevelopmental delay: Bayley Scales of Infant and Toddler Development-III(BSID)\>2 SD below mean, or other categorization at 24 months.

    Time frame: 6, 12, 18, and 24 months of age

  12. Bronchopulmonary dysplasia

    Number of infants to be diagnosed with bronchopulmonary dysplasia (BPD). It is defined according to the mode of respiratory support administered at 36 weeks' postmenstrual age, regardless of the prior duration or current level of oxygen therapy. The optimal diagnostic criteria will be no BPD, no support; grade 1 BPD, nasal cannula S2 L/min; grade 2 BPD, nasal cannula \>2 L/min or noninvasive positive airway pressure; and grade 3 BPD, invasive mechanical ventilation.

    Time frame: 6, 12, 18, and 24 months of age

06

Study locations

1 site
  • Mayo Clinic in Rochester
    Rochester, Minnesota 55905, United States
07

References and documents

Individual participant data

Plan to share: No

08

Registry details

Key details

Study ID
NCT07564297
Lead sponsor
Mayo Clinic
Responsible party
Mauro H. Schenone (Principal Investigator, Mayo Clinic) — Principal investigator
First posted
May 4, 2026
Start date
Aug 31, 2026 (estimated)
Primary completion
May 31, 2036 (estimated)
Completion
May 31, 2038 (estimated)
Last update
Aug 18, 2026

Study contacts

Mauro Schenone, MD
principal investigator · Mayo Clinic

Oversight

Data monitoring committee
Yes
FDA-regulated drug
No
FDA-regulated device
Yes
View the source record on ClinicalTrials.gov ↗

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