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Phase 1 N=15 Treatment

Gene Transfer Clinical Trial for Spinal Muscular Atrophy Type 1

Spinal Muscular Atrophy 1

Enrolled (actual)
15
Serious AEs
86.7%
Results posted
May 2019
Primary outcome: Primary: Number of Participants That Experienced One Grade III or Higher Unanticipated, Treatment-related Toxicity That Presents With Clinical Symptoms and Requires Medical Treatment — 1; 3 Participants

Study Design & Population

Study type
Interventional
Phase
Phase 1
Interventions
AVXS-101 (Biological)
Age
Pediatric
Sex
All
Sponsor
Novartis Gene Therapies
Primary completion
Dec 2017

Outcome Measures

OutcomeResultp-value
PRIMARY
Number of Participants That Experienced One Grade III or Higher Unanticipated, Treatment-related Toxicity That Presents With Clinical Symptoms and Requires Medical Treatment
1; 3
SECONDARY
Number of Participants Who Experienced Permanent Ventilation or Death
0; 0
SECONDARY
Percent Change From Baseline in Mean Children's Hospital of Philadelphia Infant Test of Neuromuscular Disorders (CHOP-INTEND) Score
30.7
SECONDARY
Number of Participants With Assessed Improvement in Motor Function
0; 9 <0.001 sig

Summary

The purpose of this trial is to evaluate safety and efficacy of intravenous delivery of AVXS-101 as a treatment of spinal muscular atrophy Type 1 (SMN1).

Eligibility Criteria

Inclusion Criteria

  • Six or nine months of age and younger (depending on cohort) on day of vector infusion with Type 1 SMA as defined by the following features:
  • Diagnosis of SMA based on gene mutation analysis with bi-allelic SMN1 mutations (deletion or point mutations) and 2 copies of SMN2.
  • Onset of disease at birth up to 6 months of age.
  • Hypotonia by clinical evaluation with delay in motor skills, poor head control, round shoulder posture and hypermobility of joints.

Exclusion Criteria

  • Active viral infection (includes HIV or serology positive for hepatitis B or C)
  • Use of invasive ventilatory support (tracheotomy with positive pressure)* or pulse oximetry 1:50 as determined by ELISA binding immunoassay.
  • Abnormal laboratory values considered clinically significant (GGT > 3XULN, bilirubin ≥ 3.0 mg/dL , creatinine ≥ 1.8 mg/dL, Hgb 18 g/Dl; WBC > 20,000 per cmm) Participation in a recent SMA treatment clinical trial that in the opinion of the PI creates unnecessary risks for gene transfer.
  • Family does not want to disclose patient's study participation with primary care physician and other medical providers.
  • Patient with signs of aspiration based on a swallowing test and unwilling to use an alternative method to oral feeding.
  • Patients with a single base substitution in SMN2 (c.859G>C in exon 7) will be excluded based on predicted mild phenotype.
View full record on ClinicalTrials.gov →

Data sourced from ClinicalTrials.gov (NCT02122952). Outcome figures and adverse-event rates are extracted automatically from the registry's posted results and are provided for clinician reference, not as a substitute for the primary publication.

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