NCT03570931

Brief Summary

The purpose of this study is to evaluate the efficacy and safety of RT001 in patients with Infantile Neuroaxonal Dystrophy (INAD).

Trial Health

55
Monitor

Trial Health Score

Automated assessment based on enrollment pace, timeline, and geographic reach

Trial has exceeded expected completion date
Enrollment
19

participants targeted

Target at below P25 for phase_2

Timeline
Completed

Started Nov 2018

Typical duration for phase_2

Geographic Reach
1 country

2 active sites

Status
active not recruiting

Health score is calculated from publicly available data and should be used for screening purposes only.

Trial Relationships

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Study Timeline

Key milestones and dates

First Submitted

Initial submission to the registry

June 11, 2018

Completed
16 days until next milestone

First Posted

Study publicly available on registry

June 27, 2018

Completed
4 months until next milestone

Study Start

First participant enrolled

November 5, 2018

Completed
1.8 years until next milestone

Primary Completion

Last participant's last visit for primary outcome

August 9, 2020

Completed
1.9 years until next milestone

Study Completion

Last participant's last visit for all outcomes

June 30, 2022

Completed
Last Updated

October 14, 2021

Status Verified

October 1, 2021

Enrollment Period

1.8 years

First QC Date

June 11, 2018

Last Update Submit

October 6, 2021

Conditions

Keywords

INADInfantile Neuroaxonal Dystrophy

Outcome Measures

Primary Outcomes (1)

  • Modified Ashworth Spasticity Scale

    Change from baseline in the Modified Ashworth spasticity scale.

    12 months

Secondary Outcomes (2)

  • INAD Progression Composite

    12 months

  • Progression Free Survival Time

    All available data

Other Outcomes (5)

  • Modified Infantile Neuroaxonal Dystrophy Rating Scale (mINAD-RS24)

    12 months

  • Modified Parental Rating Scale (mPRS22)

    12 months

  • Original Infantile Neuroaxonal Dystrophy Rating Scale (INAD-RS40)

    12 months

  • +2 more other outcomes

Study Arms (1)

RT001

EXPERIMENTAL

RT001, oral, 3.84 g/day

Drug: RT001

Interventions

RT001DRUG

RT001 is encapsulated di-deutero synthetic homologue of linoleic acid ethyl ester. Each capsule contains 960 mg of RT001.

Also known as: Deuterated linoleic acid
RT001

Eligibility Criteria

Age18 Months - 10 Years
Sexall
Healthy VolunteersNo
Age GroupsChild (0-17)

You may qualify if:

  • Male or female 18 months to 10 years of age
  • Medical history consistent with the symptoms of classic INAD (onset of symptoms between the ages of 6 months and 3 years)
  • Homozygous for PLA2G6 deficiency (variant alleles may be mixed heterozygotes)
  • Must have impairment in at least 2 of the assessed categories at baseline
  • Signed informed consent form (ICF) prior to entry into the study
  • Able to provide the necessary blood samples

You may not qualify if:

  • Received treatment with other experimental therapies within the last 30 days prior to the first dose
  • Requiring mechanical ventilation, other than positive air pressure support primarily for mitigation of sleep apnea.
  • Have a life expectancy of less than one year
  • Diagnosis of atypical NAD (ANAD)
  • Unwilling or unable to comply with the requirements of this protocol, including the presence of any condition (physical, mental, or social) that is likely to affect the subject's ability to return for visits as scheduled

Contact the study team to confirm eligibility.

Sponsors & Collaborators

Study Sites (2)

University of California San Francisco, Benioff Children's Hospital

San Francisco, California, 94158, United States

Location

Jacobs Levy Genomics and Research Program

Morristown, New Jersey, 07960, United States

Location

MeSH Terms

Conditions

Neuroaxonal Dystrophies

Interventions

RT001

Condition Hierarchy (Ancestors)

Brain DiseasesCentral Nervous System DiseasesNervous System Diseases

Study Officials

  • Peter Milner, MD

    Chief Medical Officer

    STUDY DIRECTOR

Study Design

Study Type
interventional
Phase
phase 2
Allocation
NA
Masking
NONE
Masking Details
Open Label
Purpose
TREATMENT
Intervention Model
SINGLE GROUP
Model Details: Single arm open-label study
Sponsor Type
INDUSTRY
Responsible Party
SPONSOR

Study Record Dates

First Submitted

June 11, 2018

First Posted

June 27, 2018

Study Start

November 5, 2018

Primary Completion

August 9, 2020

Study Completion

June 30, 2022

Last Updated

October 14, 2021

Record last verified: 2021-10

Locations