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000271338 1001_ $$0P:(DE-2719)9002620$$aBernhardt, Alexander Maximilian$$b0$$eFirst author
000271338 245__ $$aRisk willingness in multiple system atrophy and Parkinson's disease understanding patient preferences.
000271338 260__ $$aLondon [u.a.]$$bNature Publ. Group$$c2024
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000271338 520__ $$aDisease-modifying therapeutics in the α-synucleinopathies multiple system atrophy (MSA) and Parkinson's Disease (PD) are in early phases of clinical testing. Involving patients' preferences including therapy-associated risk willingness in initial stages of therapy development has been increasingly pursued in regulatory approval processes. In our study with 49 MSA and 38 PD patients, therapy-associated risk willingness was quantified using validated standard gamble scenarios for varying severities of potential drug or surgical side effects. Demonstrating a non-gaussian distribution, risk willingness varied markedly within, and between groups. MSA patients accepted a median 1% risk [interquartile range: 0.001-25%] of sudden death for a 99% [interquartile range: 99.999-75%] chance of cure, while PD patients reported a median 0.055% risk [interquartile range: 0.001-5%]. Contrary to our hypothesis, a considerable proportion of MSA patients, despite their substantially impaired quality of life, were not willing to accept increased therapy-associated risks. Satisfaction with life situation, emotional, and nonmotor disease burden were associated with MSA patients' risk willingness in contrast to PD patients, for whom age, and disease duration were associated factors. An individual approach towards MSA and PD patients is crucial as direct inference from disease (stage) to therapy-associated risk willingness is not feasible. Such studies may be considered by regulatory agencies in their approval processes assisting with the weighting of safety aspects in a patient-centric manner. A systematic quantitative assessment of patients' risk willingness and associated features may assist physicians in conducting individual consultations with patients who have MSA or PD by facilitating communication of risks and benefits of a treatment option.
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000271338 7001_ $$00000-0003-0597-5950$$aOeller, Marc$$b1
000271338 7001_ $$aFriedrich, Isabel$$b2
000271338 7001_ $$aKocakavuk, Emre$$b3
000271338 7001_ $$00000-0002-2069-6469$$aNachman, Eliana$$b4
000271338 7001_ $$00000-0002-0845-2453$$aPeikert, Kevin$$b5
000271338 7001_ $$aRoderigo, Malte$$b6
000271338 7001_ $$aRossmann, Andreas$$b7
000271338 7001_ $$aSchröter, Tabea$$b8
000271338 7001_ $$aWilhelm, Lea Olivia$$b9
000271338 7001_ $$00000-0002-6423-3108$$aPrell, Tino$$b10
000271338 7001_ $$0P:(DE-2719)9001486$$avan Riesen, Christoph$$b11$$udzne
000271338 7001_ $$aNieweler, Johanna$$b12
000271338 7001_ $$0P:(DE-2719)9001160$$aKatzdobler, Sabrina$$b13$$udzne
000271338 7001_ $$00000-0002-8942-7662$$aWeiler, Markus$$b14
000271338 7001_ $$0P:(DE-2719)2811564$$aJacobi, Heike$$b15
000271338 7001_ $$aWarnecke, Tobias$$b16
000271338 7001_ $$aClaus, Inga$$b17
000271338 7001_ $$0P:(DE-2719)9000852$$aPalleis, Carla$$b18$$udzne
000271338 7001_ $$0P:(DE-2719)9001161$$aBreimann, Stephan$$b19$$udzne
000271338 7001_ $$0P:(DE-2719)2814178$$aFalkenburger, Björn$$b20
000271338 7001_ $$0P:(DE-2719)2812107$$aBrandt, Moritz$$b21$$udzne
000271338 7001_ $$0P:(DE-2719)2811732$$aHermann, Andreas$$b22$$udzne
000271338 7001_ $$aRumpf, Jost-Julian$$b23
000271338 7001_ $$00000-0001-7182-6967$$aClaßen, Joseph$$b24
000271338 7001_ $$0P:(DE-2719)2811373$$aHöglinger, Günter$$b25$$udzne
000271338 7001_ $$00000-0003-2874-9817$$aGandor, Florin$$b26
000271338 7001_ $$0P:(DE-2719)2811659$$aLevin, Johannes$$b27
000271338 7001_ $$0P:(DE-2719)9000906$$aGiese, Armin$$b28
000271338 7001_ $$aJanzen, Annette$$b29
000271338 7001_ $$0P:(DE-2719)9000908$$aOertel, Wolfgang Hermann$$b30
000271338 773__ $$0PERI:(DE-600)2819218-7$$a10.1038/s41531-024-00764-5$$gVol. 10, no. 1, p. 158$$n1$$p158$$tnpj Parkinson's Disease$$v10$$x2373-8057$$y2024
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