Adrabetadex to Treat Niemann-Pick Type C1 (NPC1) Disease

NCT ID: NCT04958642

Last Updated: 2023-08-29

Study Results

Results available

Outcome measurements, participant flow, baseline characteristics, and adverse events have been published for this study.

View full results

Basic Information

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Recruitment Status

TERMINATED

Clinical Phase

PHASE2/PHASE3

Total Enrollment

66 participants

Study Classification

INTERVENTIONAL

Study Start Date

2015-12-23

Study Completion Date

2022-04-11

Brief Summary

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Due to different study designs, the sponsor separated Part C into this separate registration (NCT04958642), leaving Parts A/B in NCT02534844. The trial's final results for the primary outcome measure of Adverse Events (AE) will be reported here.

This study is to evaluate how safe and effective adrabetadex is for participants with Niemann-Pick Type C1 (NPC1) disease who experience neurologic symptoms (listed under Keywords).

In Parts A/B (NCT02534844), two out of every 3 participants will receive the study drug. The third participant will receive 1 to 2 small needle pricks at the location where the IT injection is normally made (sham control).

In Part C, all participants will receive study drug.

Detailed Description

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Participants in Part C will receive adrabetadex until the investigator considers adrabetadex to no longer be beneficial to the participant, or the development program is discontinued.

Conditions

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Niemann-Pick Disease, Type C

Study Design

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Allocation Method

NA

Intervention Model

SINGLE_GROUP

In Part C, all participants receive adrabetadex
Primary Study Purpose

TREATMENT

Blinding Strategy

NONE

Study Groups

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Adrabetadex

All participants receive their prescribed dose of adrabetadex. Dose is allowed to be adjusted down to a minimum of 400 milligrams (mg) or up to a maximum of 900 mg, at the investigator's discretion.

Group Type EXPERIMENTAL

Adrabetadex

Intervention Type DRUG

Mallinckrodt test formulation, administered intrathecal (IT) via lumbar puncture (LP) infusion.

Interventions

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Adrabetadex

Mallinckrodt test formulation, administered intrathecal (IT) via lumbar puncture (LP) infusion.

Intervention Type DRUG

Other Intervention Names

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VTS-270 2-hydroxypropyl-β-cyclodextrin Cyclodextrin

Eligibility Criteria

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Inclusion Criteria

One of the following is required for inclusion into VTS301 Part C:

* Has agreed to convert from the monthly dosing regimen used in the NIH phase 1/2a protocol to an every 2 weeks dosing regimen
* The investigator has received prior written authorization from the sponsor for the participant to enter VTS301 Part C on an amended dose and/or regimen
* Has received prior written authorization from Vtesse to enroll directly into Part C
Minimum Eligible Age

4 Years

Maximum Eligible Age

21 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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Mandos LLC

INDUSTRY

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Principal Investigators

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Clinical Study Lead

Role: STUDY_DIRECTOR

Mandos LLC

Locations

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University of Alabama at Birmingham

Birmingham, Alabama, United States

Site Status

Children's Hospital of Orange County: CHOC Children's

Orange, California, United States

Site Status

University of California San Francisco

San Francisco, California, United States

Site Status

University of Colorado Denver

Aurora, Colorado, United States

Site Status

Children's National Medical Center

Washington D.C., District of Columbia, United States

Site Status

Shands Children's Hospital

Gainesville, Florida, United States

Site Status

Rush University Medical Center

Chicago, Illinois, United States

Site Status

Eunice Kennedy Shriver National Institute of Child Health and Human Development

Bethesda, Maryland, United States

Site Status

Boston Children's Hospital

Boston, Massachusetts, United States

Site Status

Montefiore Medical Center

The Bronx, New York, United States

Site Status

University of North Carolina

Chapel Hill, North Carolina, United States

Site Status

Lehigh Valley Health Network

Allentown, Pennsylvania, United States

Site Status

The Children's Hospital of Philadelphia

Philadelphia, Pennsylvania, United States

Site Status

Dell Children's Medical Center of Central Texas

Austin, Texas, United States

Site Status

Multicare Institute for Research and Innovation

Tacoma, Washington, United States

Site Status

The Prince of Wales Hospital

Randwick, New South Wales, Australia

Site Status

Monash Medical Centre

Clayton, Victoria, Australia

Site Status

Royal Melbourne Hospital

Melbourne, Victria, Australia

Site Status

Royal Perth Hospital

Perth, Western Australia, Australia

Site Status

CHU Paris Est - Hopital d'Enfants Armand-Trousseau

Paris, Cedex 12, France

Site Status

Katholisches Klinikim Bochum gGmbH

Bochum, , Germany

Site Status

Universitaetsklinikum Mainz

Mainz, , Germany

Site Status

Universitaetsklinikum Muenster

Münster, , Germany

Site Status

Waikato Hospital

Hamilton, , New Zealand

Site Status

National University Hospital (Singapore) Pte, Ltd

Singapore, , Singapore

Site Status

INSELSPITAL, Universitätsspital Bern

Bern, , Switzerland

Site Status

Gazi University Medical Faculty

Ankara, , Turkey (Türkiye)

Site Status

Hacettepe University Medical Faculty

Ankara, , Turkey (Türkiye)

Site Status

Birmingham Children's Hospital NHS Foundation Trust

Birmingham, , United Kingdom

Site Status

Great Ormond Street Hospital

London, , United Kingdom

Site Status

Countries

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United States Australia France Germany New Zealand Singapore Switzerland Turkey (Türkiye) United Kingdom

Provided Documents

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Document Type: Study Protocol

View Document

Document Type: Statistical Analysis Plan

View Document

Other Identifiers

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2015-002548-15

Identifier Type: EUDRACT_NUMBER

Identifier Source: secondary_id

VTS301 (Part C)

Identifier Type: -

Identifier Source: org_study_id

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