title: Clinically meaningful parameters of progression and long-term outcome of Parkinson disease: An international consensus statement.
abstract: 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.
authors.affiliation: Department of Neurology, Skåne University Hospital, Lund, Sweden; Lund University, Department of Clinical Sciences, Lund, Neurology, Sweden.
authors.forename: Andreas
authors.initials: A
authors.lastname: Puschmann
authors.affiliation: Department of Neurology, San Gerardo Hospital, Milan Center for Neuroscience, Monza, Italy.
authors.forename: Laura
authors.initials: L
authors.lastname: Brighina
authors.affiliation: Department of Neurology, NorthShore University Health System, Evanston, IL, USA.
authors.forename: Katerina
authors.initials: K
authors.lastname: Markopoulou
authors.affiliation: St. Olav's Hospital, Department of Neurology, Trondheim, Norway.
authors.forename: Jan
authors.initials: J
authors.lastname: Aasly
authors.affiliation: Department of Neurology, Asan Medical Center, University of Ulsan College of Medicine, Seoul, South Korea.
authors.forename: Sun Ju
authors.initials: SJ
authors.lastname: Chung
authors.affiliation: Department of Neurology, NorthShore University Health System, Evanston, IL, USA.
authors.forename: Roberta
authors.initials: R
authors.lastname: Frigerio
authors.affiliation: Faculty of Medicine, University of Thessalia, Larissa, Greece.
authors.forename: Georgios
authors.initials: G
authors.lastname: Hadjigeorgiou
authors.affiliation: Department of Pathophysiology, University of Tartu, Tartu, Estonia.
authors.forename: Sulev
authors.initials: S
authors.lastname: Kõks
authors.affiliation: Clinical and Experimental Neuroscience, Luxembourg Center for Systems Biomedicine (LCSB), University of Luxembourg, Luxembourg, Centre Hospitalier de Luxembourg, Luxembourg.
authors.forename: Rejko
authors.initials: R
authors.lastname: Krüger
authors.affiliation: Department of Neurology, Medical University of Silesia, School of Medicine in Katowice, Poland.
authors.forename: Joanna
authors.initials: J
authors.lastname: Siuda
authors.affiliation: Department of Clinical Neuroscience, Centre Hospitalier Universitaire Vaudois (CHUV-UNIL), Lausanne, Switzerland.
authors.forename: Christian
authors.initials: C
authors.lastname: Wider
authors.affiliation: Department of Neurology, University of South Florida, Tampa, FL, USA.
authors.forename: Theresa A
authors.initials: TA
authors.lastname: Zesiewicz
authors.affiliation: Department of Neurology, NorthShore University Health System, Evanston, IL, USA. Electronic address: dmaraganore@northshore.org.
authors.forename: Demetrius M
authors.initials: DM
authors.lastname: Maraganore
mesh_terms: D003245:Consensus Statements as Topic; D018450:Disease Progression; D006801:Humans; D007087:Illinois; D038622:Internationality; D010300:Parkinson Disease / Q000175:diagnosis* / Q000453:epidemiology / Q000628:therapy*; D016896:Treatment Outcome
keywords: Disease progression; Outcome assessment (health care); Parkinson disease; Patient-centered outcomes research; Risk factors