Longitudinal Monitoring of Parkinson's Disease in Different Ethnic Cohorts: The DodoNA and LONG-PD Study
Background: Different factors influence severity, progression, and outcomes in Parkinson's disease (PD). Lack of standardized clinical assessment limits comparison of outcomes and availability of well-characterized cohorts for collaborative studies.Methods: Structured clinical documentation sup...
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Frontiers Media S.A.
2020-07-01
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Online Access: | https://www.frontiersin.org/article/10.3389/fneur.2020.00548/full |
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doaj-4c1b8ddd6b7c4216b9a2bf2bafe1db32 |
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record_format |
Article |
collection |
DOAJ |
language |
English |
format |
Article |
sources |
DOAJ |
author |
Katerina Markopoulou Jan Aasly Sun Ju Chung Efthimios Dardiotis Karin Wirdefeldt Karin Wirdefeldt Ashvini P. Premkumar Bernadette Schoneburg Ninith Kartha Gary Wilk Jun Wei Kelly Claire Simon Samuel Tideman Alexander Epshteyn Bryce Hadsell Lisette Garduno Anna Pham Roberta Frigerio Demetrius Maraganore |
spellingShingle |
Katerina Markopoulou Jan Aasly Sun Ju Chung Efthimios Dardiotis Karin Wirdefeldt Karin Wirdefeldt Ashvini P. Premkumar Bernadette Schoneburg Ninith Kartha Gary Wilk Jun Wei Kelly Claire Simon Samuel Tideman Alexander Epshteyn Bryce Hadsell Lisette Garduno Anna Pham Roberta Frigerio Demetrius Maraganore Longitudinal Monitoring of Parkinson's Disease in Different Ethnic Cohorts: The DodoNA and LONG-PD Study Frontiers in Neurology longitudinal monitoring Parkinson's disease structured clinical documentation motor symptoms non-motor symptoms |
author_facet |
Katerina Markopoulou Jan Aasly Sun Ju Chung Efthimios Dardiotis Karin Wirdefeldt Karin Wirdefeldt Ashvini P. Premkumar Bernadette Schoneburg Ninith Kartha Gary Wilk Jun Wei Kelly Claire Simon Samuel Tideman Alexander Epshteyn Bryce Hadsell Lisette Garduno Anna Pham Roberta Frigerio Demetrius Maraganore |
author_sort |
Katerina Markopoulou |
title |
Longitudinal Monitoring of Parkinson's Disease in Different Ethnic Cohorts: The DodoNA and LONG-PD Study |
title_short |
Longitudinal Monitoring of Parkinson's Disease in Different Ethnic Cohorts: The DodoNA and LONG-PD Study |
title_full |
Longitudinal Monitoring of Parkinson's Disease in Different Ethnic Cohorts: The DodoNA and LONG-PD Study |
title_fullStr |
Longitudinal Monitoring of Parkinson's Disease in Different Ethnic Cohorts: The DodoNA and LONG-PD Study |
title_full_unstemmed |
Longitudinal Monitoring of Parkinson's Disease in Different Ethnic Cohorts: The DodoNA and LONG-PD Study |
title_sort |
longitudinal monitoring of parkinson's disease in different ethnic cohorts: the dodona and long-pd study |
publisher |
Frontiers Media S.A. |
series |
Frontiers in Neurology |
issn |
1664-2295 |
publishDate |
2020-07-01 |
description |
Background: Different factors influence severity, progression, and outcomes in Parkinson's disease (PD). Lack of standardized clinical assessment limits comparison of outcomes and availability of well-characterized cohorts for collaborative studies.Methods: Structured clinical documentation support (SCDS) was developed within the DNA Predictions to Improve Neurological Health (DodoNA) project to standardize clinical assessment and identify molecular predictors of disease progression. The Longitudinal Clinical and Genetic Study of Parkinson's Disease (LONG-PD) was launched within the Genetic Epidemiology of Parkinson's disease (GEoPD) consortium using a Research Electronic Data Capture (REDCap) format mirroring the DodoNA SCDS. Demographics, education, exposures, age at onset (AAO), Unified Parkinson's Disease Rating Scale (UPDRS) parts I-VI or Movement Disorders Society (MDS)–UPDRS, Montreal Cognitive Assessment (MoCA)/Short Test of Mental Status (STMS)/Mini Mental State Examination (MMSE), Geriatric Depression Scale (GDS), Epworth Sleepiness Scale (ESS), dopaminergic therapy, family history, nursing home placement, death and blood samples were collected. DodoNA participants (396) with 6 years of follow-up and 346 LONG-PD participants with up to 3 years of follow-up were analyzed using group-based trajectory modeling (GBTM) focused on: AAO, education, family history, MMSE/MoCA/STMS, UPDRS II-II, UPDRS-III tremor and bradykinesia sub-scores, Hoehn and Yahr staging (H&Y) stage, disease subtype, dopaminergic therapy, and presence of autonomic symptoms. The analysis was performed with either cohort as the training/test set.Results: Patients are classified into slowly and rapidly progressing courses by AAO, MMSE score, H &Y stage, UPDRS-III tremor and bradykinesia sub-scores relatively early in the disease course. Late AAO and male sex assigned patients to the rapidly progressing group, whereas tremor to the slower progressing group. Classification is independent of which cohort serves as the training set. Frequencies of disease-causing variants in LRRK2 and GBA were 1.89 and 2.96%, respectively.Conclusions: Standardized clinical assessment provides accurate phenotypic characterization in pragmatic clinical settings. Trajectory analysis identified two different trajectories of disease progression and determinants of classification. Accurate phenotypic characterization is essential in interpreting genomic information that is generated within consortia, such as the GEoPD, formed to understand the genetic epidemiology of PD. Furthermore, the LONGPD study protocol has served as the prototype for collecting standardized phenotypic information at GEoPD sites. With genomic analysis, this will elucidate disease etiology and lead to targeted therapies that can improve disease outcomes. |
topic |
longitudinal monitoring Parkinson's disease structured clinical documentation motor symptoms non-motor symptoms |
url |
https://www.frontiersin.org/article/10.3389/fneur.2020.00548/full |
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doaj-4c1b8ddd6b7c4216b9a2bf2bafe1db322020-11-25T03:01:14ZengFrontiers Media S.A.Frontiers in Neurology1664-22952020-07-011110.3389/fneur.2020.00548539183Longitudinal Monitoring of Parkinson's Disease in Different Ethnic Cohorts: The DodoNA and LONG-PD StudyKaterina Markopoulou0Jan Aasly1Sun Ju Chung2Efthimios Dardiotis3Karin Wirdefeldt4Karin Wirdefeldt5Ashvini P. Premkumar6Bernadette Schoneburg7Ninith Kartha8Gary Wilk9Jun Wei10Kelly Claire Simon11Samuel Tideman12Alexander Epshteyn13Bryce Hadsell14Lisette Garduno15Anna Pham16Roberta Frigerio17Demetrius Maraganore18Department of Neurology, NorthShore University HealthSystem, Evanston, IL, United StatesDepartment of Neuromedicine and Movement Science and Department of Neurology, St Olav's Hospital, Norwegian University of Science and Technology, Trondheim, NorwayDepartment of Neurology, Asan Medical Center, University of Ulsan College of Medicine, Seoul, South KoreaDepartment of Neurology, Laboratory of Neurogenetics, University of Thessaly, University Hospital of Larissa, Larissa, GreeceDepartment of Medical Epidemiology and Biostatistics, Karolinska Institutet, Stockholm, SwedenDepartment of Clinical Neuroscience, Karolinska Institutet, Stockholm, SwedenDepartment of Neurology, NorthShore University HealthSystem, Evanston, IL, United StatesDepartment of Neurology, NorthShore University HealthSystem, Evanston, IL, United StatesDepartment of Neurology, NorthShore University HealthSystem, Evanston, IL, United StatesHealth Information Technology, NorthShore University HealthSystem, Evanston, IL, United StatesProgram for Personalized Cancer Care, NorthShore University HealthSystem, Evanston, IL, United StatesDepartment of Neurology, NorthShore University HealthSystem, Evanston, IL, United StatesHealth Information Technology, NorthShore University HealthSystem, Evanston, IL, United StatesHealth Information Technology, NorthShore University HealthSystem, Evanston, IL, United StatesHealth Information Technology, NorthShore University HealthSystem, Evanston, IL, United StatesDepartment of Neurology, NorthShore University HealthSystem, Evanston, IL, United StatesDepartment of Neurology, NorthShore University HealthSystem, Evanston, IL, United StatesDepartment of Neurology, NorthShore University HealthSystem, Evanston, IL, United StatesDepartment of Neurology, University of Florida College of Medicine, Gainesville, FL, United StatesBackground: Different factors influence severity, progression, and outcomes in Parkinson's disease (PD). Lack of standardized clinical assessment limits comparison of outcomes and availability of well-characterized cohorts for collaborative studies.Methods: Structured clinical documentation support (SCDS) was developed within the DNA Predictions to Improve Neurological Health (DodoNA) project to standardize clinical assessment and identify molecular predictors of disease progression. The Longitudinal Clinical and Genetic Study of Parkinson's Disease (LONG-PD) was launched within the Genetic Epidemiology of Parkinson's disease (GEoPD) consortium using a Research Electronic Data Capture (REDCap) format mirroring the DodoNA SCDS. Demographics, education, exposures, age at onset (AAO), Unified Parkinson's Disease Rating Scale (UPDRS) parts I-VI or Movement Disorders Society (MDS)–UPDRS, Montreal Cognitive Assessment (MoCA)/Short Test of Mental Status (STMS)/Mini Mental State Examination (MMSE), Geriatric Depression Scale (GDS), Epworth Sleepiness Scale (ESS), dopaminergic therapy, family history, nursing home placement, death and blood samples were collected. DodoNA participants (396) with 6 years of follow-up and 346 LONG-PD participants with up to 3 years of follow-up were analyzed using group-based trajectory modeling (GBTM) focused on: AAO, education, family history, MMSE/MoCA/STMS, UPDRS II-II, UPDRS-III tremor and bradykinesia sub-scores, Hoehn and Yahr staging (H&Y) stage, disease subtype, dopaminergic therapy, and presence of autonomic symptoms. The analysis was performed with either cohort as the training/test set.Results: Patients are classified into slowly and rapidly progressing courses by AAO, MMSE score, H &Y stage, UPDRS-III tremor and bradykinesia sub-scores relatively early in the disease course. Late AAO and male sex assigned patients to the rapidly progressing group, whereas tremor to the slower progressing group. Classification is independent of which cohort serves as the training set. Frequencies of disease-causing variants in LRRK2 and GBA were 1.89 and 2.96%, respectively.Conclusions: Standardized clinical assessment provides accurate phenotypic characterization in pragmatic clinical settings. Trajectory analysis identified two different trajectories of disease progression and determinants of classification. Accurate phenotypic characterization is essential in interpreting genomic information that is generated within consortia, such as the GEoPD, formed to understand the genetic epidemiology of PD. Furthermore, the LONGPD study protocol has served as the prototype for collecting standardized phenotypic information at GEoPD sites. With genomic analysis, this will elucidate disease etiology and lead to targeted therapies that can improve disease outcomes.https://www.frontiersin.org/article/10.3389/fneur.2020.00548/fulllongitudinal monitoringParkinson's diseasestructured clinical documentationmotor symptomsnon-motor symptoms |