Puschmann Andreas, Brighina Laura, Markopoulou Katerina, Aasly Jan, Chung Sun Ju, Frigerio Roberta, Hadjigeorgiou Georgios, Kõks Sulev, Krüger Rejko, Siuda Joanna, Wider Christian, Zesiewicz Theresa A, Maraganore Demetrius M
Department of Neurology, Skåne University Hospital, Lund, Sweden; Lund University, Department of Clinical Sciences, Lund, Neurology, Sweden.
Department of Neurology, San Gerardo Hospital, Milan Center for Neuroscience, Monza, Italy.
Parkinsonism Relat Disord. 2015 Jul;21(7):675-82. doi: 10.1016/j.parkreldis.2015.04.029. Epub 2015 May 1.
Parkinson disease (PD) is associated with a clinical course of variable duration, severity, and a combination of motor and non-motor features. Recent PD research has focused primarily on etiology rather than clinical progression and long-term outcomes. For the PD patient, caregivers, and clinicians, information on expected clinical progression and long-term outcomes is of great importance. Today, it remains largely unknown what factors influence long-term clinical progression and outcomes in PD; recent data indicate that the factors that increase the risk to develop PD differ, at least partly, from those that accelerate clinical progression and lead to worse outcomes. Prospective studies will be required to identify factors that influence progression and outcome. We suggest that data for such studies is collected during routine office visits in order to guarantee high external validity of such research. We report here the results of a consensus meeting of international movement disorder experts from the Genetic Epidemiology of Parkinson's Disease (GEO-PD) consortium, who convened to define which long-term outcomes are of interest to patients, caregivers and clinicians, and what is presently known about environmental or genetic factors influencing clinical progression or long-term outcomes in PD. We propose a panel of rating scales that collects a significant amount of phenotypic information, can be performed in the routine office visit and allows international standardization. Research into the progression and long-term outcomes of PD aims at providing individual prognostic information early, adapting treatment choices, and taking specific measures to provide care optimized to the individual patient's needs.
帕金森病（PD）的临床病程长短不一、严重程度各异，且兼具运动和非运动特征。近期帕金森病研究主要聚焦于病因，而非临床进展和长期预后。对于帕金森病患者、照料者及临床医生而言，有关预期临床进展和长期预后的信息至关重要。如今，在很大程度上仍不清楚哪些因素会影响帕金森病的长期临床进展和预后；近期数据表明，增加患帕金森病风险的因素与那些加速临床进展并导致更差预后的因素至少部分不同。需要开展前瞻性研究来确定影响进展和预后的因素。我们建议在常规门诊就诊期间收集此类研究的数据，以确保此类研究具有较高的外部效度。我们在此报告帕金森病遗传流行病学（GEO-PD）联盟的国际运动障碍专家共识会议的结果，这些专家齐聚一堂，以确定患者、照料者和临床医生关注哪些长期预后，以及目前已知哪些环境或遗传因素会影响帕金森病的临床进展或长期预后。我们提出一组评定量表，该量表可收集大量表型信息，能在常规门诊就诊时进行，且允许进行国际标准化。对帕金森病进展和长期预后的研究旨在尽早提供个体预后信息、调整治疗选择，并采取具体措施，根据个体患者需求提供优化护理。
