Trial Outcomes & Findings for Combined Intrathecal and Intravenous VTS-270 Therapy for Liver and Neurological Disease Associated With Niemann-Pick Disease, Type C1 (NCT NCT03887533)

NCT ID: NCT03887533

Last Updated: 2022-08-30

Results Overview

Adverse events (AEs) were used to determine safety and assess safety of intravenous VTS-270 in subjects with Niemann-Pick Disease, type C1. Assessment of safety was made by evaluation of summary statistics of adverse events and unanticipated problems. AEs were assessed using CTCAE version 5.0 grades 1-5. Grade 1 Mild; asymptomatic or mild symptoms; clinical or diagnostic observations only; intervention not indicated. Grade 2 Moderate; minimal, local or noninvasive intervention indicated; limiting age-appropriate instrumental ADL\*. Grade 3 Severe or medically significant but not immediately life-threatening; hospitalization or prolongation of hospitalization indicated; disabling; limiting self-care ADL\*\*. Grade 4 Life-threatening consequences; urgent intervention indicated. Grade 5 Death related to AE

Recruitment status

TERMINATED

Study phase

PHASE1/PHASE2

Target enrollment

2 participants

Primary outcome timeframe

18 months

Results posted on

2022-08-30

Participant Flow

Participant milestones

Participant milestones
Measure
VTS-270 at 500 mg/kg
Participant received dose of 500 mg/kg of intravenous VTS-270 administered over 2 hours monthly for 12 months. Participant also received 900 mg intrathecal VTS-270 therapy monthly for 18 months.
VTS-270 at 1000 mg/kg
Participant received 1000 mg/kg of intravenous VTS-270 over 4 hours monthly for 12 months. Participant also received 900 mg intrathecal VTS-270 therapy monthly for 18 months.
Overall Study
STARTED
1
1
Overall Study
COMPLETED
1
1
Overall Study
NOT COMPLETED
0
0

Reasons for withdrawal

Withdrawal data not reported

Baseline Characteristics

Combined Intrathecal and Intravenous VTS-270 Therapy for Liver and Neurological Disease Associated With Niemann-Pick Disease, Type C1

Baseline characteristics by cohort

Baseline characteristics by cohort
Measure
VTS-270 at 500 mg/kg
n=1 Participants
Participant received dose of 500 mg/kg of intravenous VTS-270 administered over 2 hours monthly for 12 months. Participant also received 900 mg intrathecal VTS-270 therapy monthly for 18 months.
VTS-270 at 1000 mg/kg
n=1 Participants
Participant received 1000 mg/kg of intravenous VTS-270 over 4 hours monthly for 12 months. Participant also received 900 mg intrathecal VTS-270 therapy monthly for 18 months.
Total
n=2 Participants
Total of all reporting groups
Age, Categorical
<=18 years
0 Participants
n=93 Participants
0 Participants
n=4 Participants
0 Participants
n=27 Participants
Age, Categorical
Between 18 and 65 years
1 Participants
n=93 Participants
1 Participants
n=4 Participants
2 Participants
n=27 Participants
Age, Categorical
>=65 years
0 Participants
n=93 Participants
0 Participants
n=4 Participants
0 Participants
n=27 Participants
Sex: Female, Male
Female
0 Participants
n=93 Participants
0 Participants
n=4 Participants
0 Participants
n=27 Participants
Sex: Female, Male
Male
1 Participants
n=93 Participants
1 Participants
n=4 Participants
2 Participants
n=27 Participants
Ethnicity (NIH/OMB)
Hispanic or Latino
0 Participants
n=93 Participants
0 Participants
n=4 Participants
0 Participants
n=27 Participants
Ethnicity (NIH/OMB)
Not Hispanic or Latino
1 Participants
n=93 Participants
1 Participants
n=4 Participants
2 Participants
n=27 Participants
Ethnicity (NIH/OMB)
Unknown or Not Reported
0 Participants
n=93 Participants
0 Participants
n=4 Participants
0 Participants
n=27 Participants
Race (NIH/OMB)
American Indian or Alaska Native
0 Participants
n=93 Participants
0 Participants
n=4 Participants
0 Participants
n=27 Participants
Race (NIH/OMB)
Asian
0 Participants
n=93 Participants
0 Participants
n=4 Participants
0 Participants
n=27 Participants
Race (NIH/OMB)
Native Hawaiian or Other Pacific Islander
0 Participants
n=93 Participants
0 Participants
n=4 Participants
0 Participants
n=27 Participants
Race (NIH/OMB)
Black or African American
0 Participants
n=93 Participants
0 Participants
n=4 Participants
0 Participants
n=27 Participants
Race (NIH/OMB)
White
1 Participants
n=93 Participants
1 Participants
n=4 Participants
2 Participants
n=27 Participants
Race (NIH/OMB)
More than one race
0 Participants
n=93 Participants
0 Participants
n=4 Participants
0 Participants
n=27 Participants
Race (NIH/OMB)
Unknown or Not Reported
0 Participants
n=93 Participants
0 Participants
n=4 Participants
0 Participants
n=27 Participants
Region of Enrollment
United States
1 participants
n=93 Participants
1 participants
n=4 Participants
2 participants
n=27 Participants

PRIMARY outcome

Timeframe: 18 months

Population: All participants who completed the study

Adverse events (AEs) were used to determine safety and assess safety of intravenous VTS-270 in subjects with Niemann-Pick Disease, type C1. Assessment of safety was made by evaluation of summary statistics of adverse events and unanticipated problems. AEs were assessed using CTCAE version 5.0 grades 1-5. Grade 1 Mild; asymptomatic or mild symptoms; clinical or diagnostic observations only; intervention not indicated. Grade 2 Moderate; minimal, local or noninvasive intervention indicated; limiting age-appropriate instrumental ADL\*. Grade 3 Severe or medically significant but not immediately life-threatening; hospitalization or prolongation of hospitalization indicated; disabling; limiting self-care ADL\*\*. Grade 4 Life-threatening consequences; urgent intervention indicated. Grade 5 Death related to AE

Outcome measures

Outcome measures
Measure
VTS-270 at 500 mg/kg
n=1 Participants
Participant received dose of 500 mg/kg of intravenous VTS-270 administered over 2 hours monthly for 12 months. Participant also received 900 mg intrathecal VTS-270 therapy monthly for 18 months.
VTS-270 at 1000 mg/kg
n=1 Participants
Participant received 1000 mg/kg of intravenous VTS-270 over 4 hours monthly for 12 months. Participant also received 900 mg intrathecal VTS-270 therapy monthly for 18 months.
Participants With Adverse Events by Grade
Grade 2
1 Participants
1 Participants
Participants With Adverse Events by Grade
Grade 1
1 Participants
1 Participants
Participants With Adverse Events by Grade
Grade 3
0 Participants
0 Participants
Participants With Adverse Events by Grade
Grade 4
0 Participants
0 Participants
Participants With Adverse Events by Grade
Grade 5
0 Participants
0 Participants

PRIMARY outcome

Timeframe: Assessed at baseline and at 52 weeks

Population: All participants who completed the study

Efficacy of IV VTS-270 in treating chronic liver disease associated with Niemann-Pick Disease, type C1 as measured by reduction in plasma cholestane-3β, an NPC1-specific pharmacodynamic biomarker

Outcome measures

Outcome measures
Measure
VTS-270 at 500 mg/kg
n=1 Participants
Participant received dose of 500 mg/kg of intravenous VTS-270 administered over 2 hours monthly for 12 months. Participant also received 900 mg intrathecal VTS-270 therapy monthly for 18 months.
VTS-270 at 1000 mg/kg
n=1 Participants
Participant received 1000 mg/kg of intravenous VTS-270 over 4 hours monthly for 12 months. Participant also received 900 mg intrathecal VTS-270 therapy monthly for 18 months.
Participants With Reduction in Plasma Cholestane-3β
1 Participants
0 Participants

PRIMARY outcome

Timeframe: Assessed at baseline and at 52 weeks

Population: All participants who completed the study

Efficacy of IV VTS-270 in treating chronic liver disease associated with Niemann-Pick Disease, type C1 as measured by reduction in bile acid B (5α), an NPC1-specific pharmacodynamic biomarker

Outcome measures

Outcome measures
Measure
VTS-270 at 500 mg/kg
n=1 Participants
Participant received dose of 500 mg/kg of intravenous VTS-270 administered over 2 hours monthly for 12 months. Participant also received 900 mg intrathecal VTS-270 therapy monthly for 18 months.
VTS-270 at 1000 mg/kg
n=1 Participants
Participant received 1000 mg/kg of intravenous VTS-270 over 4 hours monthly for 12 months. Participant also received 900 mg intrathecal VTS-270 therapy monthly for 18 months.
Participants With Reduction in Plasma Bile Acid B (5α)
1 Participants
0 Participants

PRIMARY outcome

Timeframe: Assessed at baseline and at 52 weeks

Population: All participants who completed the study

Efficacy of IV VTS-270 in treating chronic liver disease associated with Niemann-Pick Disease, type C1 as measured by reduction in C-Triol (6β-triol), an NPC1-specific pharmacodynamic biomarker

Outcome measures

Outcome measures
Measure
VTS-270 at 500 mg/kg
n=1 Participants
Participant received dose of 500 mg/kg of intravenous VTS-270 administered over 2 hours monthly for 12 months. Participant also received 900 mg intrathecal VTS-270 therapy monthly for 18 months.
VTS-270 at 1000 mg/kg
n=1 Participants
Participant received 1000 mg/kg of intravenous VTS-270 over 4 hours monthly for 12 months. Participant also received 900 mg intrathecal VTS-270 therapy monthly for 18 months.
Participants With Reduction in C-Triol (6β-triol)
1 Participants
0 Participants

SECONDARY outcome

Timeframe: Assessed at baseline and at 52 weeks

Population: All participants who completed the study

Efficacy of IV VTS-270 in treating chronic liver disease associated with Niemann-Pick Disease, type C1 as measured by reduction in liver stiffness (kPa)

Outcome measures

Outcome measures
Measure
VTS-270 at 500 mg/kg
n=1 Participants
Participant received dose of 500 mg/kg of intravenous VTS-270 administered over 2 hours monthly for 12 months. Participant also received 900 mg intrathecal VTS-270 therapy monthly for 18 months.
VTS-270 at 1000 mg/kg
n=1 Participants
Participant received 1000 mg/kg of intravenous VTS-270 over 4 hours monthly for 12 months. Participant also received 900 mg intrathecal VTS-270 therapy monthly for 18 months.
Participants With Reduction in Liver Stiffness (kPa)
0 Participants
0 Participants

SECONDARY outcome

Timeframe: Assessed at baseline and at 52 weeks

Population: All participants who completed the study

Efficacy of IV VTS-270 in treating chronic liver disease associated with Niemann-Pick Disease, type C1 as measured by reduction of serum alanine aminotransferase level (ALT)

Outcome measures

Outcome measures
Measure
VTS-270 at 500 mg/kg
n=1 Participants
Participant received dose of 500 mg/kg of intravenous VTS-270 administered over 2 hours monthly for 12 months. Participant also received 900 mg intrathecal VTS-270 therapy monthly for 18 months.
VTS-270 at 1000 mg/kg
n=1 Participants
Participant received 1000 mg/kg of intravenous VTS-270 over 4 hours monthly for 12 months. Participant also received 900 mg intrathecal VTS-270 therapy monthly for 18 months.
Participants With Reduction in Alanine Aminotransferase Level
0 Participants
0 Participants

SECONDARY outcome

Timeframe: Assessed at baseline and at 52 weeks

Population: All participants who completed the study

Efficacy of IV VTS-270 in treating chronic liver disease associated with Niemann-Pick Disease, type C1 as measured by reduction of serum aspartate aminotransferase (AST) level

Outcome measures

Outcome measures
Measure
VTS-270 at 500 mg/kg
n=1 Participants
Participant received dose of 500 mg/kg of intravenous VTS-270 administered over 2 hours monthly for 12 months. Participant also received 900 mg intrathecal VTS-270 therapy monthly for 18 months.
VTS-270 at 1000 mg/kg
n=1 Participants
Participant received 1000 mg/kg of intravenous VTS-270 over 4 hours monthly for 12 months. Participant also received 900 mg intrathecal VTS-270 therapy monthly for 18 months.
Participants With Reduction in Aspartate Aminotransferase
1 Participants
1 Participants

Adverse Events

VTS-270 at 500 mg/kg

Serious events: 1 serious events
Other events: 1 other events
Deaths: 0 deaths

VTS-270 at 1000 mg/kg

Serious events: 0 serious events
Other events: 1 other events
Deaths: 0 deaths

Serious adverse events

Serious adverse events
Measure
VTS-270 at 500 mg/kg
n=1 participants at risk
Participant received dose of 500 mg/kg of intravenous VTS-270 administered over 2 hours monthly for 12 months. Participant also received 900 mg intrathecal VTS-270 therapy monthly for 18 months.
VTS-270 at 1000 mg/kg
n=1 participants at risk
Participant received 1000 mg/kg of intravenous VTS-270 over 4 hours monthly for 12 months. Participant also received 900 mg intrathecal VTS-270 therapy monthly for 18 months.
Musculoskeletal and connective tissue disorders
Back pain
100.0%
1/1 • Number of events 1 • 18 months
0.00%
0/1 • 18 months

Other adverse events

Other adverse events
Measure
VTS-270 at 500 mg/kg
n=1 participants at risk
Participant received dose of 500 mg/kg of intravenous VTS-270 administered over 2 hours monthly for 12 months. Participant also received 900 mg intrathecal VTS-270 therapy monthly for 18 months.
VTS-270 at 1000 mg/kg
n=1 participants at risk
Participant received 1000 mg/kg of intravenous VTS-270 over 4 hours monthly for 12 months. Participant also received 900 mg intrathecal VTS-270 therapy monthly for 18 months.
Blood and lymphatic system disorders
Eosinophilia
0.00%
0/1 • 18 months
100.0%
1/1 • Number of events 1 • 18 months
Blood and lymphatic system disorders
Anaemia
100.0%
1/1 • Number of events 1 • 18 months
0.00%
0/1 • 18 months
Cardiac disorders
Dizziness
100.0%
1/1 • Number of events 1 • 18 months
0.00%
0/1 • 18 months
Gastrointestinal disorders
Flatulence
0.00%
0/1 • 18 months
100.0%
1/1 • Number of events 1 • 18 months
Gastrointestinal disorders
Constipation
0.00%
0/1 • 18 months
100.0%
1/1 • Number of events 1 • 18 months
Gastrointestinal disorders
Diarrhoea
0.00%
0/1 • 18 months
100.0%
1/1 • Number of events 1 • 18 months
Gastrointestinal disorders
Nausea
100.0%
1/1 • Number of events 1 • 18 months
0.00%
0/1 • 18 months
Gastrointestinal disorders
Vomiting
100.0%
1/1 • Number of events 1 • 18 months
100.0%
1/1 • Number of events 1 • 18 months
General disorders
Hypothermia
0.00%
0/1 • 18 months
100.0%
1/1 • Number of events 1 • 18 months
General disorders
Hyperthermia
0.00%
0/1 • 18 months
100.0%
1/1 • Number of events 1 • 18 months
Investigations
Activated partial thromboplastin time
100.0%
1/1 • Number of events 1 • 18 months
100.0%
1/1 • Number of events 1 • 18 months
Investigations
Alanine aminotransferase increased
100.0%
1/1 • Number of events 1 • 18 months
100.0%
1/1 • Number of events 1 • 18 months
Investigations
Aspartate aminotransferase increased
100.0%
1/1 • Number of events 1 • 18 months
100.0%
1/1 • Number of events 1 • 18 months
Investigations
Gamma-glutamyltransferase increased
0.00%
0/1 • 18 months
100.0%
1/1 • Number of events 1 • 18 months
Investigations
Lymphocyte count decreased
100.0%
1/1 • Number of events 1 • 18 months
100.0%
1/1 • Number of events 1 • 18 months
Investigations
Platelet count decreased
100.0%
1/1 • Number of events 1 • 18 months
100.0%
1/1 • Number of events 1 • 18 months
Investigations
White blood cell count decreased
100.0%
1/1 • Number of events 1 • 18 months
0.00%
0/1 • 18 months
Metabolism and nutrition disorders
Hypermagnesaemia
0.00%
0/1 • 18 months
100.0%
1/1 • Number of events 1 • 18 months
Metabolism and nutrition disorders
Hyperphosphataemia
100.0%
1/1 • Number of events 1 • 18 months
0.00%
0/1 • 18 months
Musculoskeletal and connective tissue disorders
Back pain
0.00%
0/1 • 18 months
100.0%
1/1 • Number of events 1 • 18 months
Nervous system disorders
Sensory disturbance
100.0%
1/1 • Number of events 1 • 18 months
0.00%
0/1 • 18 months
Respiratory, thoracic and mediastinal disorders
Cough
0.00%
0/1 • 18 months
100.0%
1/1 • Number of events 1 • 18 months
Respiratory, thoracic and mediastinal disorders
Nasal congestion
0.00%
0/1 • 18 months
100.0%
1/1 • Number of events 1 • 18 months
Respiratory, thoracic and mediastinal disorders
Rhinitis
100.0%
1/1 • Number of events 1 • 18 months
0.00%
0/1 • 18 months
Skin and subcutaneous tissue disorders
Skin ulcer
100.0%
1/1 • Number of events 1 • 18 months
0.00%
0/1 • 18 months
Vascular disorders
Hypertension
100.0%
1/1 • Number of events 1 • 18 months
100.0%
1/1 • Number of events 1 • 18 months
Vascular disorders
Hypotension
100.0%
1/1 • Number of events 1 • 18 months
0.00%
0/1 • 18 months
Vascular disorders
Haematuria
100.0%
1/1 • Number of events 1 • 18 months
0.00%
0/1 • 18 months

Additional Information

Dr. Forbes Porter

National Institute of Child Health and Human Development (NICHD)

Phone: 301-435-4432

Results disclosure agreements

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