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@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},
}