Expanded Access Protocol for Boys With Duchenne Muscular Dystrophy

NCT ID: NCT03863119

Last Updated: 2026-01-20

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

AVAILABLE

Study Classification

EXPANDED_ACCESS

Brief Summary

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The intent of this protocol is to provide continued access to vamorolone for subjects in the United States and Canada who have completed the VBP15-LTE, VBP15- 004, or VBP15-006 protocols (and are thereby ineligible to enroll in another trial of vamorolone therapy), during the time a new drug application for vamorolone is under preparation and review.

Detailed Description

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Vamorolone will be shipped to the subject's family by the study site. The patient will receive standard of care treatment and procedures for management of DMD. Treating Physicians participating in the expanded access program are required to collect and document any physician, patient, or caregiver reported safety events and report to the Sponsor. The subject's dose of vamorolone may be increased or decreased within a range of 2.0 to 6.0 mg/kg/day (only doses of 2 mg/kg, 4 mg/kg and 6 mg/kg are allowed), given once daily. Administration of vamorolone (taken with an 8 ounce (240 ml) glass of full fat milk, or equivalent high-fat food portion) will be unchanged from the VBP15-LTE, VBP15-004, or VBP15-006 studies. In the absence of safety concerns, and while this Expanded Access protocol is active, vamorolone may be provided indefinitely or until approval, provided that the Treating Physician and family agrees that continued administration of vamorolone is in the best interest of the child.

VBP15-EAP (under IND 118942) has been closed as vamaorolone is approved for marketing in the US VBP15-EAP CANADA has been approved by Health Canada on 11 July 2019 and is currently on-going,but not recruiting

Conditions

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Duchenne Muscular Dystrophy

Interventions

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Vamorolone

2.0 mg/kg/day, 4.0 mg/kg/day, or 6.0 mg/kg/day at physician discretion

Intervention Type DRUG

Eligibility Criteria

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Inclusion Criteria

* Subject's parent or legal guardian has provided written informed consent/HIPAA authorization
* Subject has previously completed at a participating US or Canada study site VBP15-LTE up to and including the Month 24 assessments, OR VBP15-004 up to and including the Week 48 assessments, VBP15-006 up to and including the Week 12 assessment
* Subject and parent/guardian are willing and able to comply with recommended study drug administration plan, and standard of care follow-up and monitoring as recommended by their Treating Physician

Exclusion Criteria

* Subject had a serious or severe adverse event in study VBP15-LTE or VBP15-004 or VBP15-006 that, in the opinion of the Treating Physician and Sponsor, was probably or definitely related to vamorolone use and precludes safe use of vamorolone for the subject in this expanded access program
* Subject and/or parent/guardian are unable and/or unwilling to comply with regular medical care and follow-up as recommended by their Treating Physician throughout participation in the VBP15-EAP
Eligible Sex

MALE

Accepts Healthy Volunteers

No

Sponsors

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Santhera Pharmaceuticals

INDUSTRY

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Locations

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University of California Davis

Davis, California, United States

Site Status AVAILABLE

Nemours Children's Hospital

Orlando, Florida, United States

Site Status AVAILABLE

urie Children's Hospital of Chicago

Chicago, Illinois, United States

Site Status AVAILABLE

Duke University

Durham, North Carolina, United States

Site Status AVAILABLE

University of Texas Southwestern Medical Center

Dallas, Texas, United States

Site Status AVAILABLE

Seattle Children's

Seattle, Washington, United States

Site Status AVAILABLE

Alberta's Children Hospital

Calgary, Alberta, Canada

Site Status AVAILABLE

British Columbia Children's Hospital

Vancouver, British Columbia, Canada

Site Status AVAILABLE

Children's Hospital of Eastern Ontario

Ottawa, Ontario, Canada

Site Status AVAILABLE

The Hospital for Sick Children

Toronto, Ontario, Canada

Site Status AVAILABLE

Montreal Childrens Hospital

Montreal, Quebec, Canada

Site Status AVAILABLE

Schneider Chidlren's Medical Center

Petah Tikva, , Israel

Site Status AVAILABLE

Countries

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United States Canada Israel

Central Contacts

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Medical director

Role: CONTACT

+41 61 906 89 51

Facility Contacts

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Julie Dao

Role: primary

4059552296

Kathryn Selby

Role: primary

604-875-2345 ext. 2161

Nela Martic

Role: backup

Laura Thompson

Role: primary

(613) 737-7600 ext. 6051

Ana Stosic

Role: primary

416- 813-5668 ext. 224579

Maryam Oskoui

Role: primary

Related Links

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http://www.ncbi.nlm.nih.gov/pubmed/30219580

Vamorolone Phase IIa trial in Duchenne Muscular Dystrophy

Other Identifiers

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VBP15-EAP

Identifier Type: -

Identifier Source: org_study_id

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