% IMPORTANT: The following is UTF-8 encoded. This means that in the presence
% of non-ASCII characters, it will not work with BibTeX 0.99 or older.
% Instead, you should use an up-to-date BibTeX implementation like “bibtex8” or
% “biber”.
@ARTICLE{Rttgen:278567,
author = {Röttgen, Sinah and Schäffer, Eva and Rogge, Annette and
Hartung, Ramona and Kufer, Konstantin and Fink, Gereon R and
Berg, Daniela and Ophey, Anja and Sommerauer, Michael},
title = {{T}he prodromal individuals' perspective on active
recruitment for early detection of α-synucleinopathies.},
journal = {npj Parkinson's Disease},
volume = {11},
number = {1},
issn = {2373-8057},
address = {[London]},
publisher = {Springer Nature},
reportid = {DZNE-2025-00600},
pages = {121},
year = {2025},
abstract = {Only the timely detection of individuals with incipient
α-synucleinopathies can pave the way for developing
disease-modifying therapies. Our aim was to explore the
views of individuals with isolated REM sleep behavior
disorder (iRBD), actively recruited from the general
population, on the ethical justifiability of active
recruitment and their experiences with risk disclosure. This
mixed-methods study surveyed individuals with iRBD,
confirmed by video-polysomnography, utilizing an
interdisciplinary-developed online questionnaire. Of 99
invited individuals, 75 $(75.8\%)$ answered the survey.
While $55.6\%$ experienced the information on the increased
risk as burdensome, $63.9\%$ supported risk disclosure if
consent had been obtained beforehand. Almost all individuals
$(96.2\%)$ regarded our active recruitment method as
appropriate, and $86.7\%$ indicated they would participate
again. Open-text responses indicated that key motivations
included access to information and care, and contributing to
research progress. This well-received recruitment strategy
could serve as a model for future screening initiatives in
α-synucleinopathy research.},
cin = {AG Petzold / AG Wüllner},
ddc = {610},
cid = {I:(DE-2719)1013020 / I:(DE-2719)1011302},
pnm = {353 - Clinical and Health Care Research (POF4-353)},
pid = {G:(DE-HGF)POF4-353},
typ = {PUB:(DE-HGF)16},
pubmed = {pmid:40346062},
pmc = {pmc:PMC12064827},
doi = {10.1038/s41531-025-00979-0},
url = {https://pub.dzne.de/record/278567},
}