Descriptive analysis of the French NS-Park registry: Towards a nation-wide Parkinson’s disease cohort?
Parkinsonism & Related Disorders. 2019-04-01; :
DOI: 10.1016/j.parkreldis.2019.04.012
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Mariani LL(1), Doulazmi M(2), Chaigneau V(3), Brefel-Courbon C(4), Carrière N(5), anaila T(6), Defebvre L(5), Defer G(7), Dellapina E(3), Doé de Maindreville A(8), Geny C(9), Maltête D(10), Meissner WG(11), Rascol O(12), Thobois S(6),
Torny F(13), Tranchant C(14), Vidailhet M(1), Corvol JC(1), Degos B(15); NS-Park/F-CRIN Network study group.
Author information:
(1)Sorbonne Université, Assistance Publique Hôpitaux de Paris, Institut du Cerveau et de la Moelle épinière, ICM, Inserm U 1127, CNRS UMR 7225, Department of Neurology, Hôpital Pitié-Salpêtrière, F-75013, Paris, France.
(2)Sorbonne University, CNRS, Institut de Biologie Paris Seine, Adaptation Biologique et Vieillissement, UMR8256, Paris, France.
(3)Inserm, Université de Toulouse 3, CHU de Toulouse, NS-Park/F-CRIN Network, Toulouse, France.
(4)Department of Pharmacology and Neurology, CHU Toulouse, UMR 1214 INSERM, Toulouse, France.
(5)Lille University, Inserm 1171, Movement Disorders Department, Lille, France.
(6)Faculté de Médecine Lyon Sud Charles Mérieux, Université Lyon 1, Université de Lyon, Department of Neurology C, Parkinson Expert Center, Hôpital Neurologique Pierre Wertheimer, Hospices Civils de Lyon, Lyon, France.
(7)Department of Neurology, Caen University-Hospital, Normandie University, Caen, France.
(8)Department of Neurology, Hôpital Maison Blanche, Reims, France.
(9)EuroMov, Univ. Montpellier, Montpellier, France; Department of Neurology, CHRU Montpellier, Montpellier, France.
(10)Department of Neurology, Rouen University Hospital and University of Rouen, France; INSERM U1239, Laboratory of Neuronal and Neuroendocrine Differentiation and Communication, Mont-Saint-Aignan, France.
(11)Department of Neurology, Hôpital Pellegrin, CHU de Bordeaux, 33000, Bordeaux, France; Univ. de Bordeaux, Institut des Maladies Neurodégénératives, CNRS UMR 5293, 33000, Bordeaux, France.
(12)CHU de Toulouse, INSERM, Université de Toulouse3, Centre d’Investigation Clinique CIC1436, Départements de Neurosciences et de Pharmacologie Clinique, Centre Expert Parkinson de Toulouse, NS-Park/F-CRIN Network, NeuroToul CoEN Center, Toulouse, France.
(13)Department of Neurology, Hôpital Dupuytren, CHU de Limoges, 87042, Limoges Cedex, France.
(14)Department of Neurology, Hopitaux Universitaires, Strasbourg, France; IGBMC, INSERM-U964, CNRS- UMR 7104, Université de Strasbourg, Illkirch, France; Fédération de Médecine Translationnelle de Strasbourg, Université de Strasbourg, France.
(15)Sorbonne Université, Assistance Publique Hôpitaux de Paris, Institut du Cerveau et de la Moelle épinière, ICM, Inserm U 1127, CNRS UMR 7225, Department of Neurology, Hôpital Pitié-Salpêtrière, F-75013, Paris, France; Center for
Interdisciplinary Research in Biology, Collège de France, INSERM U1050, CNRS UMR7241, Labex Memolife, Paris Sciences et Lettres, Paris, France; AP-HP, Department of Neurology, Hôpital Avicenne, Hôpitaux Universitaires de Paris –
Seine Saint Denis, Bobigny, France. Electronic address: .
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 itsrepresentativeness. 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.
Copyright © 2019. Published by Elsevier Ltd.
DOI: 10.1016/j.parkreldis.2019.04.012
PMID: 31047798