Maas Bart R, Bloem Bastiaan R, Ben-Shlomo Yoav, Evers Luc J W, Helmich Rick C, Kalf Johanna G, van der Marck Marjolein A, Meinders Marjan J, Nieuwboer Alice, Nijkrake Maarten J, Nonnekes Jorik, Post Bart, Sturkenboom Ingrid H W M, Verbeek Marcel M, de Vries Nienke M, van de Warrenburg Bart, van de Zande Tessa, Munneke Marten, Darweesh Sirwan K L
Department of Neurology, Radboud University Medical Centre, Donders Institute for Brain, Cognition and Behavior, Nijmegen, The Netherlands.
Department of Population Health Sciences, Bristol Medical School, University of Bristol, Bristol, UK.
Clin Park Relat Disord. 2023 Jan 27;8:100185. doi: 10.1016/j.prdoa.2023.100185. eCollection 2023.
Females, people with young-onset PD and older individuals, and 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 and diverse group of people with PD and also studying non-motor symptoms is warranted to better understand heterogeneity in PD and to generalize research findings.
This project aimed to determine whether, within a consecutive series of PD studies performed within a single center in the Netherlands: (1) the proportion of included females, mean age and proportion of native Dutch people changed over time; and 2) reports of the ethnicity of participants and the proportion of studies with non-motor outcomes changed over time.
Characteristics of participants and non-motor outcomes were analyzed using a unique dataset of summary statistics of studies with a large number of participants conducted at a single center during a 19-year period (2003-2021).
Results indicate no relationship between calendar time and proportion of females (mean 39 %), mean age (66 years), proportion of studies that reported ethnicity, and proportion of native Dutch people in studies (range 97-100 %). The proportion of participants in whom non-motor symptoms were assessed increased, but this difference was consistent with chance.
Study participants in this center reflect the PD population in the Netherlands in terms of sex, but older individuals and non-native Dutch individuals are under-represented. We have still a lot to do in ensuring adequate representation and diversity in PD patients within our research.
在帕金森病（PD）的临床研究中，女性、早发性帕金森病患者、老年人以及非白人人群在历史上的代表性一直不足。此外，传统研究主要集中在帕金森病的运动症状上。纳入具有代表性且多样化的帕金森病患者群体并研究非运动症状，对于更好地理解帕金森病的异质性以及推广研究结果是必要的。
本项目旨在确定在荷兰单个中心进行的一系列连续性帕金森病研究中：（1）纳入的女性比例、平均年龄和荷兰本土人的比例是否随时间变化；（2）参与者种族报告以及有非运动结局的研究比例是否随时间变化。
使用一个独特的数据集对参与者特征和非运动结局进行分析，该数据集包含了在19年期间（2003 - 2021年）于单个中心开展的大量参与者研究的汇总统计信息。
结果表明，时间与女性比例（平均39%）、平均年龄（66岁）、报告种族的研究比例以及研究中荷兰本土人的比例（范围97 - 100%）之间没有关系。评估了非运动症状的参与者比例有所增加，但这种差异与随机情况一致。
该中心的研究参与者在性别方面反映了荷兰的帕金森病患者群体，但老年人和非荷兰本土人代表性不足。在确保我们的研究中有足够的帕金森病患者代表性和多样性方面，我们仍有很多工作要做。
