Gene Transfer Therapy for Treating Children and Adults With Limb Girdle Muscular Dystrophy Type 2D (LGMD2D)

NCT ID: NCT00494195

Last Updated: 2013-02-05

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

COMPLETED

Clinical Phase

PHASE1

Total Enrollment

6 participants

Study Classification

INTERVENTIONAL

Study Start Date

2008-03-31

Study Completion Date

2011-08-31

Brief Summary

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Limb girdle muscular dystrophy type 2D (LGMD2D) is a genetic disease that affects skeletal muscle. Insufficient levels of the protein alpha-sarcoglycan result in muscle weakness that worsens over time. The purpose of this study is to evaluate the safety and effectiveness of gene therapy in treating children and adults with LGMD2D.

Detailed Description

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The primary objective of this study is the assessment of the safety of intramuscular administration to alpha-sarcoglycan deficient subjects of recombinant adeno-associated virus serotype 1 (rAAV1)-human alpha-sarcoglycan gene (hαSG) vector under control of a skeletal muscle creatine kinase promoter. The secondary objective is to determine the dose of rAAV1.tMCK.hαSG vector required to achieve a detectable level of alpha-sarcoglycan in muscle of subjects with this disorder.

A recombinant virus vector constructed from AAV1 has been altered to carry the human alpha-sarcoglycan gene expressed from a tMCK promoter. The construct has been shown to initiate the production of a functional alpha-sarcoglycan protein in laboratory animals. This construct can reverse the dystrophic phenotype in the alpha-sarcoglycan knock out mouse, a laboratory animal model for the clinical disorder. Intramuscular injection of rAAV1 restores muscle histology to normal and increases muscle strength to levels exceeding control knock out mice but not to the same degree as wild-type mice.

The proposed human clinical trial is a phase I, double-blind randomized protocol with injection of rAAV1.tMCK.hαSG gene vector into muscle. Two cohorts of subjects with LGMD2D(alpha-sarcoglycan deficiency), each with proven mutations will undergo gene transfer. A minimum of three subjects will be enrolled into each cohort. The first cohort will receive a total of 1.5 ml volume of study agent in two to six separate injections into the selected muscle (extensor digitorum brevis) or other muscle if more appropriate considering the individual patient) with a dose of 3.25 X 10 to the 11 vg in 1.5 ml. The anatomical midline point of the muscle will be identified on the skin and 2 to 6 vector injections will be distributed in the direction of an X. The second cohort will receive the same dose delivered to muscle according to the same paradigm. In each cohort, only one extremity will receive vector with transgene while the opposite extremity will be injected with placebo. On the day of the vector infusion, 4 hours before gene transfer, patients will receive intravenous methylprednisolone 2.0 mg/kg (not to exceed 1 gm total), with repeat doses on two consecutive mornings. The methylprednisolone is specifically given to diminish the immediate inflammation from the needle injection, which is known to arouse an inflammatory reaction and could contribute to bringing antigen presenting cells to the site of vector delivery. We have previously demonstrated that this treatment enhances gene expression by at least 2-fold (Included as part of BB-IND-12936 for minidystrophin gene transfer).

Safety endpoints to be assessed include inflammatory reaction to the vector, as evaluated by muscle biopsy, and changes in hematology, serum chemistry, urinalysis, immunologic responses to rAAV1 and alpha-sarcoglycan, and reported history and observations of symptoms. The patient will have 10 to 12 follow-up visits for the next 2 years after the initial infusion.

Conditions

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Muscular Dystrophies

Study Design

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Allocation Method

RANDOMIZED

Intervention Model

PARALLEL

Primary Study Purpose

TREATMENT

Blinding Strategy

QUADRUPLE

Participants Caregivers Investigators Outcome Assessors

Study Groups

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1

The first cohort will receive a total of 1.5 ml volume of study agent in two to six separate injections into the selected muscle (extensor digitorum brevis) or other muscle if more appropriate upon considering the individual patient. The dose will be 3.25 X 10 to the 11 vg in 1.5 ml. The anatomical midline point of the muscle will be identified on the skin and two to six vector injections will be distributed in the direction of an X. In each cohort, only one extremity will receive vector with transgene while the opposite extremity will be injected with placebo.

Group Type EXPERIMENTAL

rAAV1.tMCK.human-alpha-sarcoglycan- First cohort

Intervention Type GENETIC

The first cohort of subjects with LGMD2D (alpha-sarcoglycan deficiency) and proven mutations will undergo gene transfer with a minimum of three subjects enrolled into this cohort and will receive a total of 1.5 ml volume of study agent in two to six separate injections into the selected muscle (extensor digitorum brevis) or other muscle if more appropriate upon considering the individual patient. The dose will be 3.25 X 10 to the 11 vg in 1.5 ml.

In each cohort, only one extremity will receive vector with transgene while the opposite extremity will be injected with placebo.

2

The second cohort will receive the same dose of 3.25 X 10 to the 11 vg in 1.5 ml delivered to muscle according to the same paradigm. In each cohort, only one extremity will receive vector with transgene while the opposite extremity will be injected with placebo.

Group Type EXPERIMENTAL

Genetic: rAAV1.tMCK.human-alpha-sarcoglycan- Second cohort

Intervention Type GENETIC

The second cohort will receive the same dosis of 3.25 X 10 to the 11 vg in 1.5 ml delivered to muscle according to the same paradigm. In each cohort, only one extremity will receive vector with transgene while the opposite extremity will be injected with placebo.

Interventions

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rAAV1.tMCK.human-alpha-sarcoglycan- First cohort

The first cohort of subjects with LGMD2D (alpha-sarcoglycan deficiency) and proven mutations will undergo gene transfer with a minimum of three subjects enrolled into this cohort and will receive a total of 1.5 ml volume of study agent in two to six separate injections into the selected muscle (extensor digitorum brevis) or other muscle if more appropriate upon considering the individual patient. The dose will be 3.25 X 10 to the 11 vg in 1.5 ml.

In each cohort, only one extremity will receive vector with transgene while the opposite extremity will be injected with placebo.

Intervention Type GENETIC

Genetic: rAAV1.tMCK.human-alpha-sarcoglycan- Second cohort

The second cohort will receive the same dosis of 3.25 X 10 to the 11 vg in 1.5 ml delivered to muscle according to the same paradigm. In each cohort, only one extremity will receive vector with transgene while the opposite extremity will be injected with placebo.

Intervention Type GENETIC

Other Intervention Names

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LGMD2D Gene therapy-First cohort LGMD2D Gene therapy- Second cohort

Eligibility Criteria

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Inclusion Criteria

* Six LGMD2D subjects ages 5 and older based on the clinical degree of involvement (impaired muscle function/weakness, sufficient muscle preservation)
* Preservation of EDB muscle or another muscle if judged more favorable because of adequate muscle mass for gene transfer
* Males and females of any ethnic group
* Established mutations of an -SG gene on both alleles
* Ability to cooperate for testing
* Sexually active patients must be willing to practice a reliable method of contraception during the study

Exclusion Criteria

* Active viral infection (symptoms listed in section 9.0 of the protocol)
* LGMD2D subjects without weakness or functional loss
* Cardiomyopathy based on clinical exam and ECHO with ejection fraction less than 40%
* HIV infected
* Hepatitis A, B, or C infected
* Autoimmune diseases and immunosuppressive drugs (other than pulse methylprednisolone at time of gene transfer)
* Persistent leucopenia or leucocytosis (WBC less than or equal to 3.5 K/cu mm or at least 20.0 K/ cu mm) or neutrophils less than 1.5 K/ cu mm
* Concomitant illness or requirement for chronic drug treatment that in the opinion of the Principal Investigator creates unnecessary risks for gene transfer
* Pregnancy
* Abnormal laboratory values considered clinically significant
* Alcoholism (CAGE questionnaire), and laboratory tests such as GGT and MCV
Minimum Eligible Age

5 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)

NIH

Sponsor Role collaborator

Muscular Dystrophy Association

OTHER

Sponsor Role collaborator

Nationwide Children's Hospital

OTHER

Sponsor Role lead

Responsible Party

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Jerry R. Mendell

Director, Center for Gene Therapy

Responsibility Role PRINCIPAL_INVESTIGATOR

Principal Investigators

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Jerry R. Mendell, MD

Role: PRINCIPAL_INVESTIGATOR

The Research Institute at Nationwide Children's Hospital

Locations

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The Research Institute at Nationwide Children's Hospital

Columbus, Ohio, United States

Site Status

Countries

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United States

References

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Allamand V, Donahue KM, Straub V, Davisson RL, Davidson BL, Campbell KP. Early adenovirus-mediated gene transfer effectively prevents muscular dystrophy in alpha-sarcoglycan-deficient mice. Gene Ther. 2000 Aug;7(16):1385-91. doi: 10.1038/sj.gt.3301247.

Reference Type BACKGROUND
PMID: 10981665 (View on PubMed)

Buning H, Nicklin SA, Perabo L, Hallek M, Baker AH. AAV-based gene transfer. Curr Opin Mol Ther. 2003 Aug;5(4):367-75.

Reference Type BACKGROUND
PMID: 14513679 (View on PubMed)

Bueno MR, Moreira ES, Vainzof M, Chamberlain J, Marie SK, Pereira L, Akiyama J, Roberds SL, Campbell KP, Zatz M. A common missense mutation in the adhalin gene in three unrelated Brazilian families with a relatively mild form of autosomal recessive limb-girdle muscular dystrophy. Hum Mol Genet. 1995 Jul;4(7):1163-7. doi: 10.1093/hmg/4.7.1163.

Reference Type BACKGROUND
PMID: 8528203 (View on PubMed)

Rodino-Klapac LR, Lee JS, Mulligan RC, Clark KR, Mendell JR. Lack of toxicity of alpha-sarcoglycan overexpression supports clinical gene transfer trial in LGMD2D. Neurology. 2008 Jul 22;71(4):240-7. doi: 10.1212/01.wnl.0000306309.85301.e2. Epub 2008 Jun 4.

Reference Type BACKGROUND
PMID: 18525034 (View on PubMed)

Mendell JR, Rodino-Klapac LR, Rosales XQ, Coley BD, Galloway G, Lewis S, Malik V, Shilling C, Byrne BJ, Conlon T, Campbell KJ, Bremer WG, Taylor LE, Flanigan KM, Gastier-Foster JM, Astbury C, Kota J, Sahenk Z, Walker CM, Clark KR. Sustained alpha-sarcoglycan gene expression after gene transfer in limb-girdle muscular dystrophy, type 2D. Ann Neurol. 2010 Nov;68(5):629-38. doi: 10.1002/ana.22251.

Reference Type RESULT
PMID: 21031578 (View on PubMed)

Mendell JR, Rodino-Klapac LR, Rosales-Quintero X, Kota J, Coley BD, Galloway G, Craenen JM, Lewis S, Malik V, Shilling C, Byrne BJ, Conlon T, Campbell KJ, Bremer WG, Viollet L, Walker CM, Sahenk Z, Clark KR. Limb-girdle muscular dystrophy type 2D gene therapy restores alpha-sarcoglycan and associated proteins. Ann Neurol. 2009 Sep;66(3):290-7. doi: 10.1002/ana.21732.

Reference Type RESULT
PMID: 19798725 (View on PubMed)

Related Links

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http://www.nationwidechildrens.org/center-for-gene-therapy

Click here for the Nationwide Children's Hospital Web site

http://www.mdausa.org

Click here for the Muscular Dystrophy Association Web site

Other Identifiers

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U54AR050733

Identifier Type: NIH

Identifier Source: secondary_id

View Link

5U54AR050733

Identifier Type: NIH

Identifier Source: secondary_id

View Link

IRB07-00329

Identifier Type: -

Identifier Source: secondary_id

5U54AR050733

Identifier Type: NIH

Identifier Source: org_study_id

View Link

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