TY - JOUR
T1 - Clinically meaningful parameters of progression and long-term outcome of Parkinson disease
T2 - AN international consensus statement
AU - Puschmann, Andreas
AU - Brighina, Laura
AU - Markopoulou, Katerina
AU - Aasly, Jan
AU - Chung, Sun Ju
AU - Frigerio, Roberta
AU - Hadjigeorgiou, Georgios
AU - Kõks, Sulev
AU - Krüger, Rejko
AU - Siuda, Joanna
AU - Wider, Christian
AU - Zesiewicz, Theresa A.
AU - Maraganore, Demetrius M.
N1 - Funding Information:
The Evanston meeting was supported by NorthShore University HealthSystem, Evanston IL (USA) . The preparation of this article was supported by governmental funding for clinical research within the Swedish National Health Services (ALF-YF) and by funding from The Swedish Parkinson Foundation (Parkinsonfonden) to AP. The sponsors had no role in study design; in the collection, analysis and interpretation of data; in the writing of the report; and in the decision to submit the article for publication.
Publisher Copyright:
© 2015 Elsevier Ltd.
PY - 2015/7/1
Y1 - 2015/7/1
N2 - 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.
AB - 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.
KW - Disease progression
KW - Outcome assessment (health care)
KW - Parkinson disease
KW - Patient-centered outcomes research
KW - Risk factors
UR - http://www.scopus.com/inward/record.url?scp=84930761245&partnerID=8YFLogxK
U2 - 10.1016/j.parkreldis.2015.04.029
DO - 10.1016/j.parkreldis.2015.04.029
M3 - Article
C2 - 25952959
AN - SCOPUS:84930761245
SN - 1353-8020
VL - 21
SP - 675
EP - 682
JO - Parkinsonism and Related Disorders
JF - Parkinsonism and Related Disorders
IS - 7
ER -