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Abstracts from the International Congress of Parkinson’s and Movement Disorders.

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NS-PARK cohort: a nationwide real life longitudinal cohort of PD patients

H. Alfaisal, F. Durif, S. Thobois, L. Defebvre, JP. Azulay, P. Couratier, P. Damier, D. Devos, S. Drapier, A. Doe Demaindreville, S. Frismand, C. Geny, C. Giordana, JL. Houeto, P. Krystkowiak, E. Magnin, D. Maltête, W. Meissner, C. Moreau, E. Moro, P. Remy, C. Thiriez, C. Tranchant, F. Viallet, M. Vidailhet, E. Dellapina, V. Chaigneau, C. Dongmo, F. Tubach, Y. de Rycke, O. Rascol, JC. Corvol (Paris, France)

Meeting: 2019 International Congress

Abstract Number: 1794

Keywords: Dyskinesias, Wearing-off fluctuations

Session Information

Date: Wednesday, September 25, 2019

Session Title: Epidemiology

Session Time: 1:15pm-2:45pm

Location: Les Muses, Level 3

Objective: To describe the Parkinson disease (PD) population followed by the 25 expert centers for PD in France.

Background: NS-PARK is the clinical research network for PD and movement disorders including the 25 French expert centers. A database collecting information from all consecutive PD patients has been implemented to report centers activity and to facilitate recruitment of patients in clinical trials.

Method: Since 2016, NS-PARK has implemented a web-based solution to prospectively collect clinical information from all consecutive PD patients followed in the 25 expert centers in France. Clinical data are updated at each visit of the patient at the center. Clinical data include demographic data, diagnosis criteria, motor and non-motor symptoms, and current antiparkinsonian treatment. Presence or absence of motor and non-motor symptoms are collected by movement disorders specialists through standardized evaluations like MDS-UPDRS. Descriptive statistics of the data are presented. Values are expressed as median [IQR].

Results: Between July 2016 and November 2018, 19,842 patients with a diagnosis of PD were included in the database, 44% of women, mean age of 70 years old, disease duration of 8 [3-14] years.  Symptoms are available for 11,852 patients and treatment for 9,439 patients with 2 [1-4] visits per patient. The prevalence of motor and non-motor complications at the last visit of follow-up are 48% motor fluctuations, 43% dyskinesia, 36% postural instability, 15% hypotension, 31% somnolence, 20% RBD, 26% depression, 26% impulse control disorders, 15% hallucinations, 39% pain, 32% freezing, 27% cognitive impairment. Patients are treated with levodopa (91%), dopamine agonists (51%), monoamine oxidase inhibitors (30%), COMT inhibitors (30%), and amantadine (13%).

Conclusion: NS-PARK is one of the largest nationwide longitudinal cohort of PD patients. The next steps will be to improve data monitoring and cleaning, and to associate a biobank and a pipeline to collect brain imaging data.

To cite this abstract in AMA style:

H. Alfaisal, F. Durif, S. Thobois, L. Defebvre, JP. Azulay, P. Couratier, P. Damier, D. Devos, S. Drapier, A. Doe Demaindreville, S. Frismand, C. Geny, C. Giordana, JL. Houeto, P. Krystkowiak, E. Magnin, D. Maltête, W. Meissner, C. Moreau, E. Moro, P. Remy, C. Thiriez, C. Tranchant, F. Viallet, M. Vidailhet, E. Dellapina, V. Chaigneau, C. Dongmo, F. Tubach, Y. de Rycke, O. Rascol, JC. Corvol. NS-PARK cohort: a nationwide real life longitudinal cohort of PD patients [abstract]. Mov Disord. 2019; 34 (suppl 2). https://www.mdsabstracts.org/abstract/ns-park-cohort-a-nationwide-real-life-longitudinal-cohort-of-pd-patients/. Accessed May 11, 2025.
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