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Congenital Diaphragmatic HerniaNCT06739356

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

A study testing Fetal Treatment arm (FETO Group) in people with Congenital Diaphragmatic Hernia, run by The University of Texas Health Science Center, Houston at 1 site in United States.

Recruiting

Looking for participants now. Contact the study team or a site below to ask about taking part.

Sites and contacts
Official record
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Trial summary

The purpose of this study is to evaluate successful placement and removal of Fetoscopic Endoluminal Tracheal Occlusion (FETO) device in cases of intrathoracic liver herniation with isolated left congenital diaphragmatic hernia (LCDH) with Observed/Expected (O/E) Lung to Head Circumference Ratio (LHR) < 30% or isolated… Read more about this study

Who is it for?
Ages 18 years and older, women only
Conditions the study is for
Congenital Diaphragmatic Hernia
What is being tested?
Fetal Treatment arm (FETO Group)
Type of treatment
Medical device
Could I receive a placebo?
No, everyone receives an active treatment
How many people
80 participants
Where
1 siteUnited States
Study dates
4 Mar 2025to 1 Dec 2031
Phase
Interventional
Are there results?
Not yet: the study is under way

Key requirements

Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.

  • Ages 18 years and older
  • Women only
  • No healthy volunteers
  • Adult, Older adult

Who may be able to join

  • Pregnant women who are able to consent
  • Singleton pregnancy
  • Normal Karyotype, chromosomal microanalysis (CMA) with non-pathologic variants, Whole exome sequencing (WES) or whole genome sequencing (WGS) . Results by fluorescence in situ hybridization (FISH) will be acceptable if the patient is > 26 weeks
  • Gestational age at enrollment is prior to 296 wks.
  • Intrathoracic liver herniation
  • Isolated left CDH with o/e LHR < 30% at enrollment (180 to 295 wks.). or
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  • Isolated RCDH with o/e LHR < 45% at enrollment (180 to 295 wks.)
  • Cervical length by transvaginal ultrasound > 20 mm within 24 hours prior to FETO procedure
  • Patient meets psychosocial criteria
  • Informed consent understood

Who cannot join

  • History of natural rubber latex allergy
  • Preterm labor, cervix shortened (<20 mm at enrollment or within 24 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 University of Texas Health Science Center at Houston Fetal Center
  • The 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 UTHealth Houston Fetal Center
  • 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
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  • No liver herniation into thoracic cavity
  • Additional fetal anomaly and chromosomal abnormalities by ultrasound, MRI, or echocardiogram at the fetal treatment center. Exclude chromosomal abnormalities, associated anomalies recognized to alter survival prognosis (i.e., CDH and congenital heart disease) or presence of an underlying genetic syndrome (i.e., Fryns).
  • 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 anomalies 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

Trial locations and contacts

1 site in 1 country. Contact the study team or a site near you to ask about taking part.

United States1 site, 1 recruiting
  • The University of Texas Health Science Center at Houston

    Houston, Texas, 77030

    Anthony Johnson, DO, (713) 500-5859, Anthony.Johnson@uth.tmc.edu

    Elisa P Garcia, (713) 500-7434, Elisa.I.Garcia@uth.tmc.edu

    Recruiting

Other trials in United States

About this study

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

The purpose of this study is to evaluate successful placement and removal of Fetoscopic Endoluminal Tracheal Occlusion (FETO) device in cases of intrathoracic liver herniation with isolated left congenital diaphragmatic hernia (LCDH) with Observed/Expected (O/E) Lung to Head Circumference Ratio (LHR) < 30% or isolated right congenital diaphragmatic hernia (RCDH) with O/E LHR < 45%,to compare survival to discharge from the neonatal intensive care units (NICU), between fetuses with intrathoracic liver herniation and isolated LCDH with O/E LHR < 30% that receive FETO procedure performed at 27 weeks 0 days to 29weeks 6 days of gestation to those with intrathoracic liver herniation, isolated LCDH and o/e LRH < 30% that undergo expectant management, to compare the neonatal survival rate to discharge from the neonatal intensive care units (NICU), between fetuses with intrathoracic liver herniation, isolated RCHD with o/e LHR < 45% that undergo FETO procedure performed at 27 weeks 0 days to 29 weeks 6 days gestation to those with intrathoracic liver herniation, isolated RCHD and o/e LHR < 45% that elect to proceed with expectant management, to evaluate the frequency of maternal and fetal complications associated with FETO procedure, to evaluate whether the FETO procedure is associated with reduced long-term mortality and morbidities in isolated LCDH survivors with o/e LHR <30% when compared to isolated LCDH with o/e LRH <30% that undergo expectant management where all fetuses were found to have intrathoracic liver herniation and to evaluate whether the FETO procedure is associated with reduced long-term mortality and morbidities in isolated RCDH survivors with o/e LHR ≤ 45% when compared to isolated RCHD with LHR < 45% that undergo expectant management where all fetuses were found to have intrathoracic liver herniation

Being tested
Fetal Treatment arm (FETO Group)
Keywords
Fetoscopic Endoluminal Tracheal Occlusion
Medical subject headings
Hernias, Diaphragmatic, Congenital

What participants receive

What participants receive. In a randomised study each person is assigned to one group by chance.

  • Fetal Treatment arm (FETO Group)Device

    Participants will undergo FETO surgery at at 27 weeks 0 days - 29 weeks 6 days gestation.Balloon insertion into the fetal trachea will be performed. This will be followed by weekly \ ultrasound monitoring and MRI at 3 weeks following FETO insertion and removal of the balloon which will be performed at at 34 weeks 0 days to 34 weeks 6 days. Planned delivery will occur after 37 weeks. The follow-up phase will be conducted from birth to 24 months of age

Study groups in NCT06739356
Study groupRoleWhat they receive
Fetal Treatment arm (FETO Group)ExperimentalNot described
Receives: Device: Fetal Treatment arm (FETO Group)
Expectant Management Arm (Control Group)No interventionNot described

What is being measured

The primary outcome is the main question the study is designed to answer.

  1. Number of neonates that survived

    Measured: from delivery to hospital discharge (up to 12 months)

  2. Number of Successful placement of FETO device

    Measured: 10-60 minutes after surgery begins

  3. Number of Successful removal of FETO device

    Measured: immediately after the procedure (about 1 hour after start of surgery)

  4. FETO procedure complications

    Complications include, Failure FETO insertion procedure, FETO device dislodgement potentially requiring a second FETO insertion, Fetal intraoperative injury, Procedural hemorrhage, Bleeding from insertion site or Abruptions, Post-procedural hemorrhage PPROM, Preterm delivery, Chorioamnion separation,Chorioamnionitis, Polyhydramnios, Oligohydramnios,Emergent removal due to obstetrical complication, Failed percutaneous or fetoscopic removal requiring cesarean section or exit procedure for removal, Neonatal death due to asphyxia if delivery before FETO removal and Non-reassuring fetal heart rate monitoring

    Measured: end of study (24 months)

Secondary outcomes (48)
  1. Number of infants that survived

    Measured: 6 months

  2. Number of infants that survived

    Measured: 12 months

  3. Number of infants that survived

    Measured: 18 months

  4. Number of infants that survived

    Measured: 24 months

  5. Number of infants that show presence of pulmonary hypertension

    Measured: 6 months

  6. Number of infants that show presence of pulmonary hypertension

    Measured: 12 months

  7. Number of infants that show presence of pulmonary hypertension

    Measured: 18 months

  8. Number of infants that show presence of pulmonary hypertension

    Measured: 24 months

  9. Number of infants that show need for supplemental oxygen

    Measured: 6 months

  10. Number of infants that show need for supplemental oxygen

    Measured: 12 months

  11. Number of infants that show need for supplemental oxygen

    Measured: 18 months

  12. Number of infants that show need for supplemental oxygen

    Measured: 24 months

  13. Number of infants that show periventricular leukomalacia

    Measured: at less than 2 months postnatally

  14. Number of Infants that develop sepsis

    Measured: 6 months

  15. Number of Infants that develop sepsis

    Measured: 12 months

  16. Number of Infants that develop sepsis

    Measured: 18 months

  17. Number of Infants that develop sepsis

    Measured: 24 months

  18. Number of infants that develop Intraventricular hemorrhage (grade 0-III)

    Measured: 6 months

  19. Number of infants that develop Intraventricular hemorrhage (grade 0-III)

    Measured: 12 months

  20. Number of infants that develop Intraventricular hemorrhage (grade 0-III)

    Measured: 18 months

  21. Number of infants that develop Intraventricular hemorrhage (grade 0-III)

    Measured: 24 months

  22. Number of infants that develop retinopathy of prematurity (grade 3 or higher)

    Measured: 6 months

  23. Number of infants that develop retinopathy of prematurity (grade 3 or higher)

    Measured: 12 months

  24. Number of infants that develop retinopathy of prematurity (grade 3 or higher)

    Measured: 18 months

  25. Number of infants that develop retinopathy of prematurity (grade 3 or higher)

    Measured: 24 months

  26. Number of infants that develop gastro-esophageal reflux

    Measured: 6 months

  27. Number of infants that develop gastro-esophageal reflux

    Measured: 12 months

  28. Number of infants that develop gastro-esophageal reflux

    Measured: 18 months

  29. Number of infants that develop gastro-esophageal reflux

    Measured: 24 months

  30. Number of infant hospital readmissions

    Measured: end of study (24 months)

  31. Cause of infant hospital readmissions

    Measured: end of study (24 months)

  32. Number of infants that show childhood growth failure

    Measured: 6 months

  33. Number of infants that show childhood growth failure

    Measured: 12 months

  34. Number of infants that show childhood growth failure

    Measured: 18 months

  35. Number of infants that show childhood growth failure

    Measured: 24 months

  36. Number of infants that show recurrence of CDH repair

    Measured: 6 months

  37. Number of infants that show recurrence of CDH repair

    Measured: 12 months

  38. Number of infants that show recurrence of CDH repair

    Measured: 18 months

  39. Number of infants that show recurrence of CDH repair

    Measured: 24 months

  40. Number of infants that develop bowel obstruction

    Measured: 6 months

  41. Number of infants that develop bowel obstruction

    Measured: 12 months

  42. Number of infants that develop bowel obstruction

    Measured: 18 months

  43. Number of infants that develop bowel obstruction

    Measured: 24 months

  44. Number of infants that show neurodevelopmental delay as assessed by the Bayley Scales of Infant and Toddler Development-III(BSID)

    Three domains will be measured as follows: Cognitive Scale, Language Scale (Receptive and Expressive) and Motor Scale (Fine and Gross Motor Skills). Scores are derived by converting raw scores from completed tasks into scale scores and composite scores. These scores are then utilized to assess the child's performance in relation to norms established based on typically developing children of the same age

    Mean score of 100 (SD=15) at the 50th percentile signifies mid-average functioning.

    Scores below 85 (1 SD below the mean), at the 16th percentile, indicate mild impairment of being 'at risk' of developmental delay.

    Score below 70 (2 SD below the mean), at the second percentile, indicate moderate to severe impairment.

    In general, scores falling in the lowest 10th percentile indicate developmental delay

    Measured: 24 months

  45. Number of infants that develop bronchopulmonary dysplasia

    Measured: 6 months

  46. Number of infants that develop bronchopulmonary dysplasia

    Measured: 12 months

  47. Number of infants that develop bronchopulmonary dysplasia

    Measured: 18 months

  48. Number of infants that develop bronchopulmonary dysplasia

    Measured: 24 months

Timeline

From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.

  1. First posted18 Dec 2024
  2. Study start4 Mar 2025
  3. Primary completion1 Dec 2029 (estimated)
  4. Study completion1 Dec 2031 (estimated)

Resources

More details

For doctors and researchers: how the study is designed, who runs it, and its registry IDs.

Study design
Study type
Interventional
Phase
Phase N/A
Primary purpose
Treatment
Allocation
Non-randomised
Intervention model
Parallel groups
Masking
None (open label)
Enrolment
80 participants (estimated)
IDs, dates and publications
ClinicalTrials.gov ID
NCT06739356
Sponsor's protocol ID
HSC-MS-24-0984
Status last verified
Oct 2026
First submitted
9 Dec 2024
Last updated
20 Oct 2026
Results posted
No
Data monitoring committee
Yes
FDA-regulated drug
No
FDA-regulated device
Yes
Individual data sharing
No

Questions about this trial

What is this clinical trial studying?

A study testing Fetal Treatment arm (FETO Group) in people with Congenital Diaphragmatic Hernia, run by The University of Texas Health Science Center, Houston at 1 site in United States.

The full registered description is in the About this study section and the official record.

Who may be eligible to take part?

The sponsor lists 10 inclusion and 16 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.

Is this clinical trial currently recruiting?

The record says: looking for participants now, as of the sponsor's last update on 20 Oct 2026. Status can change between updates, so confirm with the study contact before making plans.

Where is the study taking place?

The record lists 1 site in United States. Whether a site is taking part right now should be confirmed with that site. See every site.

What are the possible benefits and risks?

They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.

Are results available for this study?

This study is still under way. Results are not available in the source record yet.

How can a doctor refer a patient or contact the research team?

Contact Anthony Johnson, DO ((713) 500-5859, Anthony.Johnson@uth.tmc.edu), or a site near the patient. AzTrials does not enrol participants or take referrals.

What does the primary outcome measure?

Number of neonates that survived (time frame: from delivery to hospital discharge (up to 12 months)). The study lists 4 primary outcomes in all. It is what the study was designed to measure, not a finding.

Where can I read the original study information?
Does a listing mean the treatment is approved or proven to work?

No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.

How often is this information updated?

AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 20 Oct 2026.

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