An Expanded Access Program for Risdiplam in Participants With Spinal Muscular Atrophy (SMA)

NCT ID: NCT04256265

Last Updated: 2020-10-05

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

APPROVED_FOR_MARKETING

Study Classification

EXPANDED_ACCESS

Brief Summary

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This expanded access program (EAP) will provide access to risdiplam for eligible participants with Type 1 or Type 2 spinal muscular atrophy (SMA) before it is commercially available in the United States for the indication of SMA.

Detailed Description

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Conditions

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Muscular Atrophy, Spinal

Interventions

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Risdiplam

Risdiplam will be administered orally once daily

Intervention Type DRUG

Eligibility Criteria

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Inclusion Criteria

All Participants:

* Not eligible for treatment with currently approved treatments for SMA, or cannot continue treatment with currently approved medications as documented by the treating physician, or in the treating physician's judgment, the participant is at risk of lack/loss of treatment efficacy of the current therapy.
* The participant does not qualify for and has no access to SMA treatment in the context of an ongoing clinical trial.
* Adequately recovered from any acute illness at the time of screening, and considered clinically well enough to participate, in the opinion of the treating physician.
* Participants with retinopathy of prematurity should have evidence of stable disease.

Type 1 SMA Participants:

\- Confirmed diagnosis of 5q-autosomal recessive SMA.

Type 2 SMA Participants:

* Confirmed diagnosis of 5q-autosomal recessive SMA.
* Negative blood pregnancy test at screening (all women of childbearing potential, including those who have had a tubal ligation), and agreement to comply with measures to prevent pregnancy and restrictions on egg and sperm donation.
* Males with female partners of reproductive potential must agree to use highly effective contraception during therapy, and for at least 4 months after treatment discontinuation.

Exclusion Criteria

* Inability to meet program requirements.
* Concomitant or previous participation in any investigational drug or device study within 90 days prior to screening or 5 half-lives, whichever is longer.
* Administration of other SMN-2 targeting therapy within 120 days of starting risdiplam therapy.
* Administration of SMA gene therapy within the last 3 months (12 weeks) of receiving risdiplam therapy.
* Any serious medical condition, treatment, or abnormality in clinical laboratory tests that, in the treating physician's judgment, precludes the participant's safe participation in the program.
* Ascertained or presumptive hypersensitivity (e.g., anaphylactic reaction) to risdiplam or to the constituents of its formulation.
* Suspicion of illicit drug or alcohol abuse, in the treating physician's judgment.
* Any prior use of an inhibitor or inducer of flavin-containing monooxygenases 1 (FMO1) or flavin-containing monooxygenases 3 (FMO3) taken within 2 weeks (or within 5 times the elimination half-life, whichever is longer) prior to dosing.
Minimum Eligible Age

2 Months

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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Genentech, Inc.

INDUSTRY

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Principal Investigators

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Clinical Trials

Role: STUDY_DIRECTOR

Hoffmann-La Roche

Locations

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Arkansas Children's Hospital; Pediatrics

Little Rock, Arkansas, United States

Site Status

Children's Hospital Los Angeles

Los Angeles, California, United States

Site Status

Stanford University

Palo Alto, California, United States

Site Status

University of Colorado in Denver-Anschutz Medical Campus

Aurora, Colorado, United States

Site Status

Nemours Children's Hospital

Orlando, Florida, United States

Site Status

Comprehensive NeuroBehavioral Institute

Plantation, Florida, United States

Site Status

Rare Disease Research, LLC

Atlanta, Georgia, United States

Site Status

Ann and Robert H. Lurie Children Hospital of Chicago

Chicago, Illinois, United States

Site Status

Southern Illinois University, School of Medicine

Springfield, Illinois, United States

Site Status

Indiana Hemophilia & Thrombosis center

Indianapolis, Indiana, United States

Site Status

University of Iowa

Iowa City, Iowa, United States

Site Status

University of Kansas Medical Center

Kansas City, Kansas, United States

Site Status

University of Louisville

Louisville, Kentucky, United States

Site Status

Massachusetts General Hospital; Neurology

Boston, Massachusetts, United States

Site Status

Helen DeVos Children's Hospital at Spectrum Health

Grand Rapids, Michigan, United States

Site Status

University of Mississippi Medical Center; Neurology

Jackson, Michigan, United States

Site Status

Gillette Spcl Children's Clin; Pediatric Endocrinology

Saint Paul, Minnesota, United States

Site Status

St. Louis Children Hospital

St Louis, Missouri, United States

Site Status

Goryeb Children's Hospital

Morristown, New Jersey, United States

Site Status

Northwell Hospital

New Hyde Park, New York, United States

Site Status

NYU Langone

New York, New York, United States

Site Status

University of Rochester Medical Center

Rochester, New York, United States

Site Status

Wake Forest Baptist Medical Center

Winston-Salem, North Carolina, United States

Site Status

Akron Childrens Hospital

Akron, Ohio, United States

Site Status

Nationwide Children's Hospital

Columbus, Ohio, United States

Site Status

University of Virginia Children's Hospital; Developmental

Charlottesville, Virginia, United States

Site Status

University of Wisconsin American Family; Childrens Hospital

Madison, Wisconsin, United States

Site Status

Childrens Hospital of Wisconsin

Milwaukee, Wisconsin, United States

Site Status

Medical College of Wisconsin, Inc.

Milwaukee, Wisconsin, United States

Site Status

Countries

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United States

References

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Kwon JM, Arya K, Kuntz N, Phan HC, Sieburg C, Swoboda KJ, Veerapandiyan A, Assman B, Bader-Weder S, Dickendesher TL, Hansen J, Lin H, Yan Y, Rao VK; US Expanded Access Program Working Group. An expanded access program of risdiplam for patients with Type 1 or 2 spinal muscular atrophy. Ann Clin Transl Neurol. 2022 Jun;9(6):810-818. doi: 10.1002/acn3.51560. Epub 2022 May 14.

Reference Type DERIVED
PMID: 35567422 (View on PubMed)

Other Identifiers

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AL41887

Identifier Type: -

Identifier Source: org_study_id

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