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@ARTICLE{Wurster:304479,
author = {C. D. Wurster and B. Stolte and T. Kessler$^*$ and M.
Freigang and B. Bjelica and B. Ilse and J. C. Koch and I.
Cordts and A. Mensch and D. Zeller and Z. Uzelac and G. Sam
and H. S. Lapp and C. Wohnrade and A. Rödiger and M. T.
Muhandes and I. Schneider and J. Bellut and J. Nentwich and
J. Dorst and J. Schuster and O. Schreiber-Katz and A.
Osmanovic and A. Totzeck and A. Thimm and R. Steinbach and
J. Grosskreutz and C. Kleinschnitz and A. C. Ludolph and M.
Deschauer and J. Kirschner and J. Dreyhaupt and K. Wollinsky
and S. Petri and M. Weiler and T. Hagenacker and R.
Günther},
title = {{R}espiratory function in 192 adult patients with spinal
muscular atrophy ({SMA}) treated with nusinersen - a
multicenter observational study.},
journal = {Orphanet journal of rare diseases},
volume = {20},
number = {1},
issn = {1750-1172},
address = {London},
publisher = {BioMed Central},
reportid = {DKFZ-2025-01871},
pages = {476},
year = {2025},
abstract = {Natural history data show that respiratory function is
impaired in SMA patients. Observational studies have shown
stabilization of respiratory function in adult SMA patients
treated with nusinersen. However, long-term studies
investigating the effect of nusinersen on respiratory
function in adult SMA patients are rare.We examined
respiratory function using forced vital capacity of
predicted normal $(FVC\%),$ FVC in liters, capacity per
second (FEV1) and peak expiratory flow (PEF) in 192 adult
SMA patients treated with nusinersen for a median of 3.2
years (IQR: 2.1–4.0, range: 0.2–5.2). Changes in
spirometric parameters were analyzed using individual linear
regression models separate in each patient to estimate the
slope. Additionally, three multivariable models were
performed to assess the effect of age, sex, treatment
duration, baseline $FVC\%$ and each one of the variables of
interest (1) SMA type, (2) ambulation status, (3)
spondylodesis on follow-up $FVC\%.$ Associations between
respiratory parameters and motor function (HFMSE) were
investigated via Scatter plots and Spearman’s rank
correlation.Spirometric parameters remained stable during
treatment (median annual rate of change of $FVC\%$ $0.17\%$
(p = 0.40), FVC in liters -0.002 (p = 0.59), FEV1 -0.014 l
(p = 0.06) and PEF 0.025 l/s (p = 0.65)). In all
multivariable models, age, sex, treatment duration, SMA
type, ambulation status, and spondylodesis showed no
significant association with follow-up $FVC\%.$ No
significant correlations were observed between respiratory
and motor function.Respiratory parameters remained stable
during treatment with nusinersen in adult SMA patients over
several years.Not applicable.},
keywords = {Adult patients (Other) / Forced vital capacity (FVC)
(Other) / Nusinersen (Other) / Respiratory function (Other)
/ Spinal muscular atrophy (SMA) (Other)},
cin = {B320 / HD01},
ddc = {610},
cid = {I:(DE-He78)B320-20160331 / I:(DE-He78)HD01-20160331},
pnm = {312 - Funktionelle und strukturelle Genomforschung
(POF4-312)},
pid = {G:(DE-HGF)POF4-312},
typ = {PUB:(DE-HGF)16},
pubmed = {pmid:40922023},
pmc = {pmc:PMC12418672},
doi = {10.1186/s13023-025-04009-3},
url = {https://inrepo02.dkfz.de/record/304479},
}