Time trends in demographic characteristics of participants and outcome measures in Parkinson’s disease research: A 19-year single-center experience

• DOI: 10.1016/j.prdoa.2023.100185
• Publication Date: 2023-01-27T07:27:14Z
• Authors: Bart R. Maas; Bastiaan R. Bloem; Yoav Ben-Shlomo; Luc J.W. Evers; Rick C. Helmich; Johanna G. Kalf; Marjolein A. van ...; Marjan J. Meinders; Alice Nieuwboer; Maarten J. Nijkrake; Jorik Nonnekes; Bart Post; Ingrid H.W.M. Stu...; Marcel M. Verbeek; Nienke M. de Vries; Bart van de Warre...; Tessa van de Zande; Marten Munneke; Sirwan K.L. Darweesh
• Keywords: Radboudumc 18: Healthcare improvement science IQ Healthcare; Parkinson's disease; Short Communication; 610; Radboud University Medical Center; Non-motor symptoms; Parkinsonism; 240 Systems Neurology; Outcome measure; 03 medical and health sciences; Age; Elderly; 0302 clinical medicine; Ehtnicity; Females; Radboudumc 18: Healthcare improvement science Geriatrics; RC346-429; Representative; Diversity; Underrepresentation; Radboudumc 18: Healthcare improvement science Neurology; Gender; Radboudumc 3: Disorders of movement DCMN: Donders Center for Medical Neuroscience; Time trends; Participant characteristics; 16. Peace & justice; Young-onset; Sex; Demographics; Neurology. Diseases of the nervous system; Radboudumc 18: Healthcare improvement science Rehabilitation

Females, people with young-onset PD and older individuals, non-white populations are historically underrepresented in clinical Parkinson's disease (PD) research. Furthermore, research traditionally focused predominantly on motor symptoms of PD. Including a representative diverse group also studying non-motor is warranted to better understand heterogeneity generalize findings.This project aimed determine whether, within consecutive series studies performed single center the Netherlands: (1) proportion included females, mean age native Dutch changed over time; 2) reports ethnicity participants outcomes time.Characteristics were analyzed using unique dataset summary statistics large number conducted at during 19-year period (2003-2021).Results indicate no relationship between calendar time females (mean 39 %), (66 years), that reported ethnicity, (range 97-100 %). The whom assessed increased, but this difference was consistent chance.Study reflect population Netherlands terms sex, individuals non-native under-represented. We have still lot do ensuring adequate representation diversity patients our