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@ARTICLE{Synofzik:138570,
author = {Synofzik, Matthis and Smets, Katrien and Mallaret, Martial
and Di Bella, Daniela and Gallenmüller, Constanze and
Baets, Jonathan and Schulze, Martin and Magri, Stefania and
Sarto, Elisa and Mustafa, Mona and Deconinck, Tine and
Haack, Tobias and Züchner, Stephan and Gonzalez, Michael
and Timmann, Dagmar and Stendel, Claudia and Klopstock,
Thomas and Durr, Alexandra and Tranchant, Christine and
Sturm, Marc and Hamza, Wahiba and Nanetti, Lorenzo and
Mariotti, Caterina and Koenig, Michel and Schöls, Ludger
and Schüle, Rebecca and de Jonghe, Peter and Anheim,
Mathieu and Taroni, Franco and Bauer, Peter},
title = {{SYNE}1 ataxia is a common recessive ataxia with major
non-cerebellar features: a large multi-centre study.},
journal = {Brain},
volume = {139},
number = {5},
issn = {1460-2156},
address = {Oxford},
publisher = {Oxford Univ. Press},
reportid = {DZNE-2020-04892},
pages = {1378-1393},
year = {2016},
abstract = {Mutations in the synaptic nuclear envelope protein 1
(SYNE1) gene have been reported to cause a relatively pure,
slowly progressive cerebellar recessive ataxia mostly
identified in Quebec, Canada. Combining next-generation
sequencing techniques and deep-phenotyping (clinics,
magnetic resonance imaging, positron emission tomography,
muscle histology), we here established the frequency,
phenotypic spectrum and genetic spectrum of SYNE1 in a
screening of 434 non-Canadian index patients from seven
centres across Europe. Patients were screened by whole-exome
sequencing or targeted panel sequencing, yielding 23
unrelated families with recessive truncating SYNE1 mutations
(23/434 = $5.3\%).$ In these families, 35 different
mutations were identified, 34 of them not previously linked
to human disease. While only 5/26 patients $(19\%)$ showed
the classical SYNE1 phenotype of mildly progressive pure
cerebellar ataxia, 21/26 $(81\%)$ exhibited additional
complicating features, including motor neuron features in
15/26 $(58\%).$ In three patients, respiratory dysfunction
was part of an early-onset multisystemic neuromuscular
phenotype with mental retardation, leading to premature
death at age 36 years in one of them. Positron emission
tomography imaging confirmed hypometabolism in
extra-cerebellar regions such as the brainstem. Muscle
biopsy reliably showed severely reduced or absent SYNE1
staining, indicating its potential use as a non-genetic
indicator for underlying SYNE1 mutations. Our findings,
which present the largest systematic series of SYNE1
patients and mutations outside Canada, revise the view that
SYNE1 ataxia causes mainly a relatively pure cerebellar
recessive ataxia and that it is largely limited to Quebec.
Instead, complex phenotypes with a wide range of
extra-cerebellar neurological and non-neurological
dysfunctions are frequent, including in particular motor
neuron and brainstem dysfunction. The disease course in this
multisystemic neurodegenerative disease can be fatal,
including premature death due to respiratory dysfunction.
With a relative frequency of $∼5\%,$ SYNE1 is one of the
more common recessive ataxias worldwide.},
keywords = {Adult / Aged / Brain: metabolism / Cerebellar Ataxia:
diagnosis / Cerebellar Ataxia: diagnostic imaging /
Cerebellar Ataxia: genetics / Cerebellar Ataxia:
physiopathology / Cytoskeletal Proteins / Evoked Potentials,
Motor: physiology / Female / Genes, Recessive /
Heredodegenerative Disorders, Nervous System: diagnosis /
Heredodegenerative Disorders, Nervous System: diagnostic
imaging / Heredodegenerative Disorders, Nervous System:
genetics / Heredodegenerative Disorders, Nervous System:
physiopathology / High-Throughput Nucleotide Sequencing /
Humans / Magnetic Resonance Imaging / Male / Middle Aged /
Muscles: metabolism / Mutation, Missense / Nerve Tissue
Proteins: genetics / Nerve Tissue Proteins: metabolism /
Neuroimaging / Nuclear Proteins: genetics / Nuclear
Proteins: metabolism / Phenotype / Positron-Emission
Tomography / Young Adult / Cytoskeletal Proteins (NLM
Chemicals) / Nerve Tissue Proteins (NLM Chemicals) / Nuclear
Proteins (NLM Chemicals) / SYNE1 protein, human (NLM
Chemicals)},
cin = {AG Gasser 1 / Ext LMU Klinik / AG Höglinger 1 / Clinical
Dementia Research München / AG Schöls 1 / AG Maetzler},
ddc = {610},
cid = {I:(DE-2719)1210000 / I:(DE-2719)5000049 /
I:(DE-2719)1110002 / I:(DE-2719)1111016 / I:(DE-2719)5000005
/ I:(DE-2719)5000024},
pnm = {345 - Population Studies and Genetics (POF3-345) / 344 -
Clinical and Health Care Research (POF3-344)},
pid = {G:(DE-HGF)POF3-345 / G:(DE-HGF)POF3-344},
typ = {PUB:(DE-HGF)16},
pubmed = {pmid:27086870},
pmc = {pmc:PMC6363274},
doi = {10.1093/brain/aww079},
url = {https://pub.dzne.de/record/138570},
}