Wednesday, May 9, 2018

Intraventricular cerliponase alfa for CLN2 disease


Schulz A, Ajayi T, Specchio N, de Los Reyes E, Gissen P, Ballon D, Dyke JP, Cahan H, Slasor P, Jacoby D, Kohlschütter A; CLN2 Study Group. Study of Intraventricular Cerliponase Alfa for CLN2 Disease. N Engl J Med. 2018 Apr 24. doi: 10.1056/NEJMoa1712649. [Epub ahead of print]

Abstract
Background Recombinant human tripeptidyl peptidase 1 (cerliponase alfa) is an enzyme-replacement therapy that has been developed to treat neuronal ceroid lipofuscinosis type 2 (CLN2) disease, a rare lysosomal disorder that causes progressive dementia in children. Methods In a multicenter, open-label study, we evaluated the effect of intraventricular infusion of cerliponase alfa every 2 weeks in children with CLN2 disease who were between the ages of 3 and 16 years. Treatment was initiated at a dose of 30 mg, 100 mg, or 300 mg; all the patients then received the 300-mg dose for at least 96 weeks. The primary outcome was the time until a 2-point decline in the score on the motor and language domains of the CLN2 Clinical Rating Scale (which ranges from 0 to 6, with 0 representing no function and 3 representing normal function in each of the two domains), which was compared with the rate of decline in 42 historical controls. We also compared the rate of decline in the motor-language score between the two groups, using data from baseline to the last assessment with a score of more than 0, divided by the length of follow-up (in units of 48 weeks). Results Twenty-four patients were enrolled, 23 of whom constituted the efficacy population. The median time until a 2-point decline in the motor-language score was not reached for treated patients and was 345 days for historical controls. The mean (±SD) unadjusted rate of decline in the motor-language score per 48-week period was 0.27±0.35 points in treated patients and 2.12±0.98 points in 42 historical controls (mean difference, 1.85; P<0.001). Common adverse events included convulsions, pyrexia, vomiting, hypersensitivity reactions, and failure of the intraventricular device. In 2 patients, infections developed in the intraventricular device that was used to administer the infusion, which required antibiotic treatment and device replacement. Conclusions Intraventricular infusion of cerliponase alfa in patients with CLN2 disease resulted in less decline in motor and language function than that in historical controls. Serious adverse events included failure of the intraventricular device and device-related infections. (Funded by BioMarin Pharmaceutical and others; CLN2 ClinicalTrials.gov numbers, NCT01907087 and NCT02485899 .).
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Methods

Initial treatment dose was 30 mg, 100 mg, or 300 mg; then the 300-mg dose was administered to all patients for at least 96 weeks.
The time until a 2-point decline in the score on the motor and language domains of the CLN2 Clinical Rating Scale (which ranges from 0 to 6, with 0 representing no function and 3 representing normal function in each of the two domains) was the primary outcome, and this was compared with the rate of decline in 42 historical controls.
Rate of decline in the motor–language score was compared between the two groups using data from baseline to the last assessment with a score of more than 0, divided by the length of follow-up (in units of 48 weeks).

Results
Researchers enrolled 24 patients, 23 of whom constituted the efficacy population.
For treated patients, the median time until a 2-point decline in the motor–language score was not reached, while for historical controls, it was 345 days.
In treated patients, the mean (±SD) unadjusted rate of decline in the motor–language score per 48-week period was 0.27±0.35 points, and in 42 historical controls, was 2.12±0.98 points (mean difference, 1.85; P<0.001).
Convulsions, pyrexia, vomiting, hypersensitivity reactions, and failure of the intraventricular device were recognized as common adverse events.
Infections developed in the intraventricular device that was used to administer the infusion in 2 patients, which required antibiotic treatment and device replacement.

https://www.mdlinx.com/neurology/medical-news-article/2018/04/30/cerliponase-alfa-enzyme-replacement-therapy-dementia/7511705

See:  http://childnervoussystem.blogspot.com/2018/04/cerliponase-alfa-for-cln2-disease.html (I am 67, after all)

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