Trial Outcomes & Findings for Fetal Treatment of Galenic Malformations (NCT NCT04434729)

NCT ID: NCT04434729

Last Updated: 2026-01-06

Results Overview

The procedure is deemed safe if 1. None of the following unacceptable events occur within 7 days of fetal embolization: 1. Fetal death 2. Fetal intracranial hemorrhage, either parenchymal or extra-axial, other than petechial hemorrhage. 3. Maternal death 2. None of the following unacceptable events occur between fetal embolization and delivery: 1. Intra-procedural and post-procedural morbidity to the fetus and mother, probably related to the fetal intervention, e.g. placental abruption with subsequent sequelae 2. Preterm delivery \< 28 weeks, probably related to the fetal intervention 3. Maternal blood transfusion or unanticipated surgical intervention, probably related to the fetal intervention 4. Presence of fetal imaging evidence of new brain injury in a location or pattern unexpected for the natural history of vein of Galen malformation, probably related to the fetal intervention

Recruitment status

ACTIVE_NOT_RECRUITING

Study phase

NA

Target enrollment

7 participants

Primary outcome timeframe

From fetal embolization to delivery

Results posted on

2026-01-06

Participant Flow

Participant milestones

Participant milestones
Measure
Fetal Embolization of Vein of Galen Malformation
This is a single-arm study. Fetal subjects will undergo a one-time intervention of fetal embolization of vein of Galen malformation. Fetal embolization of vein of Galen malformation using Target XL and XXL Detachable Coils: The study involves a single fetal intervention of maternal transuterine, fetal transcranial torcular puncture and median prosencephalic vein embolization. Detachable platinum coils (Target XL and XXL Detachable Coil, Stryker Neurovascular) will be used to pack the prosencephalic varix.
Overall Study
STARTED
7
Overall Study
COMPLETED
5
Overall Study
NOT COMPLETED
2

Reasons for withdrawal

Reasons for withdrawal
Measure
Fetal Embolization of Vein of Galen Malformation
This is a single-arm study. Fetal subjects will undergo a one-time intervention of fetal embolization of vein of Galen malformation. Fetal embolization of vein of Galen malformation using Target XL and XXL Detachable Coils: The study involves a single fetal intervention of maternal transuterine, fetal transcranial torcular puncture and median prosencephalic vein embolization. Detachable platinum coils (Target XL and XXL Detachable Coil, Stryker Neurovascular) will be used to pack the prosencephalic varix.
Overall Study
Adverse Event
1
Overall Study
Physician Decision
1

Baseline Characteristics

Fetal Treatment of Galenic Malformations

Baseline characteristics by cohort

Baseline characteristics by cohort
Measure
Fetal Embolization of Vein of Galen Malformation
n=7 Participants
This is a single-arm study. Fetal subjects will undergo a one-time intervention of fetal embolization of vein of Galen malformation. Fetal embolization of vein of Galen malformation using Target XL and XXL Detachable Coils: The study involves a single fetal intervention of maternal transuterine, fetal transcranial torcular puncture and median prosencephalic vein embolization. Detachable platinum coils (Target XL and XXL Detachable Coil, Stryker Neurovascular) will be used to pack the prosencephalic varix.
Age, Continuous
32.4 years
n=9 Participants
Sex: Female, Male
Female
3 Participants
n=9 Participants
Sex: Female, Male
Male
4 Participants
n=9 Participants
Race (NIH/OMB)
American Indian or Alaska Native
0 Participants
n=9 Participants
Race (NIH/OMB)
Asian
0 Participants
n=9 Participants
Race (NIH/OMB)
Native Hawaiian or Other Pacific Islander
0 Participants
n=9 Participants
Race (NIH/OMB)
Black or African American
1 Participants
n=9 Participants
Race (NIH/OMB)
White
3 Participants
n=9 Participants
Race (NIH/OMB)
More than one race
1 Participants
n=9 Participants
Race (NIH/OMB)
Unknown or Not Reported
2 Participants
n=9 Participants

PRIMARY outcome

Timeframe: From fetal embolization to delivery

Population: All 7 participants enrolled in the study.

The procedure is deemed safe if 1. None of the following unacceptable events occur within 7 days of fetal embolization: 1. Fetal death 2. Fetal intracranial hemorrhage, either parenchymal or extra-axial, other than petechial hemorrhage. 3. Maternal death 2. None of the following unacceptable events occur between fetal embolization and delivery: 1. Intra-procedural and post-procedural morbidity to the fetus and mother, probably related to the fetal intervention, e.g. placental abruption with subsequent sequelae 2. Preterm delivery \< 28 weeks, probably related to the fetal intervention 3. Maternal blood transfusion or unanticipated surgical intervention, probably related to the fetal intervention 4. Presence of fetal imaging evidence of new brain injury in a location or pattern unexpected for the natural history of vein of Galen malformation, probably related to the fetal intervention

Outcome measures

Outcome measures
Measure
Fetal embolization of vein of Galen malformation
n=7 Participants
This is a single-arm study. Fetal subjects will undergo a one-time intervention of fetal embolization of vein of Galen malformation. Fetal embolization of vein of Galen malformation using Target XL and XXL Detachable Coils: The study involves a single fetal intervention of maternal transuterine, fetal transcranial torcular puncture and median prosencephalic vein embolization. Detachable platinum coils (Target XL and XXL Detachable Coil, Stryker Neurovascular) will be used to pack the prosencephalic varix.
Prenatal Safety of Fetal Embolization for Patients With Vein of Galen Malformations
5 Participants

SECONDARY outcome

Timeframe: Within 30 days of birth

Population: All participants who successfully completed the embolization procedure.

The procedure is deemed efficacious if none of the following serious postnatal events occur within 30 days of birth: 1. Urgent neonatal embolization is needed. Without fetal intervention, we'd expect 80% of the cohort to require such intervention. 2. Neonatal death. Without fetal intervention, we'd expect a mortality rate of 40% in this cohort. 3. Brain MRI within the first three weeks after birth reveals parenchymal brain injury (acute infarct or gliosis) affecting \> 10% of the supratentorial brain volume. Without fetal intervention, we'd expect 30% of patients in this cohort to show this kind of injury.

Outcome measures

Outcome measures
Measure
Fetal embolization of vein of Galen malformation
n=5 Participants
This is a single-arm study. Fetal subjects will undergo a one-time intervention of fetal embolization of vein of Galen malformation. Fetal embolization of vein of Galen malformation using Target XL and XXL Detachable Coils: The study involves a single fetal intervention of maternal transuterine, fetal transcranial torcular puncture and median prosencephalic vein embolization. Detachable platinum coils (Target XL and XXL Detachable Coil, Stryker Neurovascular) will be used to pack the prosencephalic varix.
Efficacy of Fetal Embolization for Patients With Vein of Galen Malformations
2 Participants

Adverse Events

Fetal Embolization of Vein of Galen Malformation

Serious events: 2 serious events
Other events: 2 other events
Deaths: 3 deaths

Serious adverse events

Serious adverse events
Measure
Fetal Embolization of Vein of Galen Malformation
n=7 participants at risk
This is a single-arm study. Fetal subjects will undergo a one-time intervention of fetal embolization of vein of Galen malformation. Fetal embolization of vein of Galen malformation using Target XL and XXL Detachable Coils: The study involves a single fetal intervention of maternal transuterine, fetal transcranial torcular puncture and median prosencephalic vein embolization. Detachable platinum coils (Target XL and XXL Detachable Coil, Stryker Neurovascular) will be used to pack the prosencephalic varix.
Cardiac disorders
Sinus tachycardia, hypotension
14.3%
1/7 • Number of events 1 • Adverse events were collected from the time of enrollment through 2 years post-delivery.
The NCI-CTCAE v 5.0 system is used for maternal adverse events. The International Neonatal Consortium (INC) Neonatal Adverse Event Severity Scale is used for neonatal adverse events.
Pregnancy, puerperium and perinatal conditions
Complete chorion-amnion separation
14.3%
1/7 • Number of events 1 • Adverse events were collected from the time of enrollment through 2 years post-delivery.
The NCI-CTCAE v 5.0 system is used for maternal adverse events. The International Neonatal Consortium (INC) Neonatal Adverse Event Severity Scale is used for neonatal adverse events.

Other adverse events

Other adverse events
Measure
Fetal Embolization of Vein of Galen Malformation
n=7 participants at risk
This is a single-arm study. Fetal subjects will undergo a one-time intervention of fetal embolization of vein of Galen malformation. Fetal embolization of vein of Galen malformation using Target XL and XXL Detachable Coils: The study involves a single fetal intervention of maternal transuterine, fetal transcranial torcular puncture and median prosencephalic vein embolization. Detachable platinum coils (Target XL and XXL Detachable Coil, Stryker Neurovascular) will be used to pack the prosencephalic varix.
Pregnancy, puerperium and perinatal conditions
Premature rupture of membranes
14.3%
1/7 • Number of events 1 • Adverse events were collected from the time of enrollment through 2 years post-delivery.
The NCI-CTCAE v 5.0 system is used for maternal adverse events. The International Neonatal Consortium (INC) Neonatal Adverse Event Severity Scale is used for neonatal adverse events.
Pregnancy, puerperium and perinatal conditions
Preterm premature rupture of membranes (PPROM)
14.3%
1/7 • Number of events 1 • Adverse events were collected from the time of enrollment through 2 years post-delivery.
The NCI-CTCAE v 5.0 system is used for maternal adverse events. The International Neonatal Consortium (INC) Neonatal Adverse Event Severity Scale is used for neonatal adverse events.

Additional Information

Dr. Darren Orbach

Boston Children's Hospital

Phone: 617-355-5012

Results disclosure agreements

  • Principal investigator is a sponsor employee
  • Publication restrictions are in place