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Observational Study
. 2019 Jul:64:226-234.
doi: 10.1016/j.parkreldis.2019.04.012. Epub 2019 Apr 25.

Descriptive analysis of the French NS-Park registry: Towards a nation-wide Parkinson's disease cohort?

Louise-Laure Mariani  1 , Mohamed Doulazmi  2 , Véronique Chaigneau  3 , Christine Brefel-Courbon  4 , Nicolas Carrière  5 , Teodor Danaila  6 , Luc Defebvre  5 , Gilles Defer  7 , Estelle Dellapina  3 , Anne Doé de Maindreville  8 , Christian Geny  9 , David Maltête  10 , Wassilios G Meissner  11 , Olivier Rascol  12 , Stéphane Thobois  6 , Frederic Torny  13 , Christine Tranchant  14 , Marie Vidailhet  1 , Jean-Christophe Corvol  1 , Bertrand Degos  15 ; NS-Park/F-CRIN Network study group
Affiliations
Observational Study

Descriptive analysis of the French NS-Park registry: Towards a nation-wide Parkinson's disease cohort?

Louise-Laure Mariani et al. Parkinsonism Relat Disord. 2019 Jul.

Abstract

Introduction: Parkinson's disease (PD) is the second most common neurodegenerative disorder after Alzheimer's. The French clinical research network for PD (NS-Park) has created a national patient registry to i)report medical activity of Parkinson Expert Centers (PECs) to the Ministry of Health, ii)facilitate PD patients pre-screening for clinical trials, iii) provide a source for pharmaco-epidemiology studies.

Objective: Assess the French Parkinsonian population at a nation-wide level and discover new clinical characteristics.

Methods: In this feasibility study, PECs prospectively collected clinical data in a standardized manner. The population main clinical characteristics are described, focusing on motor and non-motor symptoms and treatments, assessing its representativeness. By using an unbiased clustering with multiple correspondence analysis (MCA), we also investigate potential relationships between multiple variables like symptoms and treatments, as clues for future studies.

Results: Between 2012 and 2016, among 11,157 included parkinsonian syndromes, 9454 (85%) had PD. MCA identified various profiles depending on disease duration. Occurrences of motor complications, axial signs, cognitive disorders and Levodopa use increase over time. Neurovegetative symptoms, psychiatric disorders, sleep disturbances and impulse control disorders (ICDs) seem stable over time. As expected, ICDs were associated to dopaminergic agonist use but other associations, such as ICDs and sleep disturbances for instance, or anxiety and depression, were found.

Conclusions: Our results report one of the biggest PD registries ever reported and demonstrate the feasibility of implementing a nation-wide registry of PD patients in France, a potent tool for future longitudinal studies and clinical trials' population selection, and for pharmaco-epidemiology and cost-effectiveness studies.

Keywords: National database registry; Parkinson disease.

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