Cerliponase Alfa for the Treatment of Atypical Phenotypes of CLN2 Disease: A Retrospective Case Series.


Journal

Journal of child neurology
ISSN: 1708-8283
Titre abrégé: J Child Neurol
Pays: United States
ID NLM: 8606714

Informations de publication

Date de publication:
05 2021
Historique:
pubmed: 29 12 2020
medline: 15 12 2021
entrez: 28 12 2020
Statut: ppublish

Résumé

The classic phenotype of CLN2 disease (neuronal ceroid lipofuscinosis type 2) typically manifests between ages 2 and 4 years with a predictable clinical course marked by epilepsy, language developmental delay, and rapid psychomotor decline. Atypical phenotypes exhibit variable time of onset, symptomatology, and/or progression. Intracerebroventricular-administered cerliponase alfa (rhTPP1 enzyme) has been shown to stabilize motor and language function loss in patients with classic CLN2 disease, but its impact on individuals with atypical phenotypes has not been described. A chart review was conducted of 14 patients (8 male, 6 female) with atypical CLN2 phenotypes who received cerliponase alfa. Pre- and posttreatment CLN2 Clinical Rating Scale Motor and Language (ML) domain scores were compared. Median age at first presenting symptom was 5.9 years. First reported symptoms were language abnormalities (6 [43%] patients), seizures (4 [29%]), ataxia/language abnormalities (3 [21%]), and ataxia alone (1 [7%]). Median age at diagnosis was 10.8 years. ML score declined before treatment in 13 (93%) patients. Median age at treatment initiation was 11.7 years; treatment duration ranged from 11 to 58 months. From treatment start, ML score remained stable in 11 patients (treatment duration 11-43 months), improved 1 point in 1 patient after 13 months, and declined 1 point in 2 patients after 15 and 58 months, respectively. There were 13 device-related infections in 8 patients (57%) and 10 hypersensitivity reactions in 6 (43%). Cerliponase alfa is well tolerated and has the potential to stabilize motor and language function in patients with atypical phenotypes of CLN2 disease.

Sections du résumé

BACKGROUND
The classic phenotype of CLN2 disease (neuronal ceroid lipofuscinosis type 2) typically manifests between ages 2 and 4 years with a predictable clinical course marked by epilepsy, language developmental delay, and rapid psychomotor decline. Atypical phenotypes exhibit variable time of onset, symptomatology, and/or progression. Intracerebroventricular-administered cerliponase alfa (rhTPP1 enzyme) has been shown to stabilize motor and language function loss in patients with classic CLN2 disease, but its impact on individuals with atypical phenotypes has not been described.
METHODS
A chart review was conducted of 14 patients (8 male, 6 female) with atypical CLN2 phenotypes who received cerliponase alfa. Pre- and posttreatment CLN2 Clinical Rating Scale Motor and Language (ML) domain scores were compared.
RESULTS
Median age at first presenting symptom was 5.9 years. First reported symptoms were language abnormalities (6 [43%] patients), seizures (4 [29%]), ataxia/language abnormalities (3 [21%]), and ataxia alone (1 [7%]). Median age at diagnosis was 10.8 years. ML score declined before treatment in 13 (93%) patients. Median age at treatment initiation was 11.7 years; treatment duration ranged from 11 to 58 months. From treatment start, ML score remained stable in 11 patients (treatment duration 11-43 months), improved 1 point in 1 patient after 13 months, and declined 1 point in 2 patients after 15 and 58 months, respectively. There were 13 device-related infections in 8 patients (57%) and 10 hypersensitivity reactions in 6 (43%).
CONCLUSIONS
Cerliponase alfa is well tolerated and has the potential to stabilize motor and language function in patients with atypical phenotypes of CLN2 disease.

Identifiants

pubmed: 33356800
doi: 10.1177/0883073820977997
pmc: PMC8027928
doi:

Substances chimiques

Recombinant Proteins 0
Dipeptidyl-Peptidases and Tripeptidyl-Peptidases EC 3.4.14.-
cerliponase alfa EC 3.4.14.-

Types de publication

Journal Article

Langues

eng

Sous-ensembles de citation

IM

Pagination

468-474

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Auteurs

Eva Wibbeler (E)

37734University Medical Center Hamburg-Eppendorf, Children's Hospital, Hamburg, Germany.

Raymond Wang (R)

CHOC Children's Specialists, Orange, CA, USA.
University of California-Irvine School of Medicine, Irvine, CA, USA.

Emily de Los Reyes (EL)

2650Nationwide Children Hospital Columbus Ohio, Ohio State University, Columbus, OH, USA.

Nicola Specchio (N)

Bambino Gesu, Rome, Italy.

Paul Gissen (P)

The NIHR Great Ormond Street Hospital, Biomedical Research Centre, London, UK.

Norberto Guelbert (N)

Hospital de Niños de la Santísima Trinidad [Holy Trinity Children's Hospital], Cordoba, Argentina.

Miriam Nickel (M)

37734University Medical Center Hamburg-Eppendorf, Children's Hospital, Hamburg, Germany.

Christoph Schwering (C)

37734University Medical Center Hamburg-Eppendorf, Children's Hospital, Hamburg, Germany.

Lenora Lehwald (L)

2650Nationwide Children Hospital Columbus Ohio, Ohio State University, Columbus, OH, USA.

Marina Trivisano (M)

Bambino Gesu, Rome, Italy.

Laura Lee (L)

The NIHR Great Ormond Street Hospital, Biomedical Research Centre, London, UK.

Gianni Amato (G)

Biostats LLC, Las Vegas, NV, USA.

Jessica Cohen-Pfeffer (J)

10926BioMarin, Novato, CA, USA.

Renée Shediac (R)

10926BioMarin, Novato, CA, USA.

Fernanda Leal-Pardinas (F)

10926BioMarin, Novato, CA, USA.

Angela Schulz (A)

37734University Medical Center Hamburg-Eppendorf, Children's Hospital, Hamburg, Germany.

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Classifications MeSH