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Phase 3 N=89 Randomized Quadruple-blind Treatment

Efficacy and Safety Study of Deferiprone in Patients With Pantothenate Kinase-associated Neurodegeneration (PKAN)

Pantothenate Kinase-Associated Neurodegeneration

Enrolled (actual)
89
Serious AEs
31.8%
Results posted
May 2019
Primary outcome: Primary: Change in Score on Barry-Albright Dystonia Scale — 2.48; 3.99 score on a scale — p=0.0761

Study Design & Population

Study type
Interventional
Phase
Phase 3
Interventions
Deferiprone oral solution (Drug); Placebo (Drug)
Age
Pediatric, Adult, Older Adult · 4+ yrs
Sex
All
Sponsor
ApoPharma
Primary completion
Oct 2016

Outcome Measures

OutcomeResultp-value
PRIMARY
Change in Score on Barry-Albright Dystonia Scale
2.48; 3.99 0.0761
PRIMARY
Score on Patient Global Impression of Improvement at End of Study
4.55; 4.66 0.7279
SECONDARY
Change in Score on Unified Parkinson's Disease Rating Scale
-0.25; -0.07; 1.09; 2.36; 5.38; 2.06 0.7228
SECONDARY
Change in Score on Functional Independence Measure
5.40; 0.69 0.1524
SECONDARY
Change in Score on WeeFIM
4.91; -2.40 0.2026
SECONDARY
Change in Score on Pediatric Quality of Life
1.21; 1.34; -4.90; -2.37 0.9759
SECONDARY
Change in Score on Pittsburgh Sleep Quality Index
0.48; 0.14 0.6323
SECONDARY
Change in Level of Brain Iron
-36.1; -0.50 0.0000 sig

Summary

A multi-center, placebo controlled, double-blind trial comparing the efficacy and safety of 18 months of treatment with deferiprone versus placebo in patients with PKAN. This investigator-initiated trial was funded by the European Commission's Seventh Framework Programme (FP7/2007-2013, HEALTH-F2-2011, grant agreement No. 277984) to the TIRCON consortium (Treat Iron-Related Childhood-Onset Neurodegeneration) and by the FDA Office of Orphan Products Development (OOPD) (Dr. Elliott Vichinsky).

Eligibility Criteria

Main Inclusion Criteria:

  • Males or females 4 years of age and older at screening visit;
  • Have PKAN, confirmed by genetic testing (supporting evidence required);
  • Barry-Albright Dystonia (BAD) total score ≥ 3 at the screening visit;
  • Patients who have Deep Brain Stimulation (DBS) systems or baclofen pumps in place will be eligible for the study, but they must have had a stable setting for at least two months prior to the screening visit and stimulation parameters / pump settings must remain stable for the duration of the trial:

Main Exclusion Criteria:

  • Evidence of iron deficiency defined by Fe:TIBC ratio 3 times upper limit of normal at screening) or abnormal creatinine levels at screening visit;
  • Disorders associated with neutropenia (ANC < 1.5 x 10^9/L) or thrombocytopenia (platelet count < 50 x 10^9/L) in the 12 months preceding the initiation of the study medication. Exception: for patients whose neutropenia was attributed by the treating physician to episodes of infection or to drugs associated with a decline in the neutrophil count and in whom the ANC has fully recovered at the screening visit;
  • History of malignancy;

Other protocol inclusion or exclusion criteria may apply.

View full record on ClinicalTrials.gov →

Data sourced from ClinicalTrials.gov (NCT01741532). 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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