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. 2020;10(1):301-313.
doi: 10.3233/JPD-191775.

The Quebec Parkinson Network: A Researcher-Patient Matching Platform and Multimodal Biorepository

Ziv Gan-Or  1   2   3 , Trisha Rao  4 , Etienne Leveille  2   5 , Clotilde Degroot  1   2 , Sylvain Chouinard  6 , Francesca Cicchetti  7   8 , Alain Dagher  2 , Samir Das  9 , Alex Desautels  10   11 , Janelle Drouin-Ouellet  12 , Thomas Durcan  1   2 , Jean-François Gagnon  10   13 , Angela Genge  1   2   4 , Jason Karamchandani  14 , Anne-Louise Lafontaine  1   2   15 , Sonia Lai Wing Sun  2 , Mélanie Langlois  16   17 , Martin Levesque  8   18 , Calvin Melmed  1   19 , Michel Panisset  6 , Martin Parent  8   18 , Jean-Baptiste Poline  2 , Ronald B Postuma  1   2 , Emmanuelle Pourcher  16   17 , Guy A Rouleau  1   2   3 , Madeleine Sharp  1   2 , Oury Monchi  1   20   21 , Nicolas Dupré  16   17 , Edward A Fon  1   2
Affiliations

The Quebec Parkinson Network: A Researcher-Patient Matching Platform and Multimodal Biorepository

Ziv Gan-Or et al. J Parkinsons Dis. 2020.

Abstract

Background: Genetic, biologic and clinical data suggest that Parkinson's disease (PD) is an umbrella for multiple disorders with clinical and pathological overlap, yet with different underlying mechanisms. To better understand these and to move towards neuroprotective treatment, we have established the Quebec Parkinson Network (QPN), an open-access patient registry, and data and bio-samples repository.

Objective: To present the QPN and to perform preliminary analysis of the QPN data.

Methods: A total of 1,070 consecutively recruited PD patients were included in the analysis. Demographic and clinical data were analyzed, including comparisons between males and females, PD patients with and without RBD, and stratified analyses comparing early and late-onset PD and different age groups.

Results: QPN patients exhibit a male:female ratio of 1.8:1, an average age-at-onset of 58.6 years, an age-at-diagnosis of 60.4 years, and average disease duration of 8.9 years. REM-sleep behavior disorder (RBD) was more common among men, and RBD was associated with other motor and non-motor symptoms including dyskinesia, fluctuations, postural hypotension and hallucinations. Older patients had significantly higher rates of constipation and cognitive impairment, and longer disease duration was associated with higher rates of dyskinesia, fluctuations, freezing of gait, falls, hallucinations and cognitive impairment. Since QPN's creation, over 60 studies and 30 publications have included patients and data from the QPN.

Conclusions: The QPN cohort displays typical PD demographics and clinical features. These data are open-access upon application (http://rpq-qpn.ca/en/), and will soon include genetic, imaging and bio-samples. We encourage clinicians and researchers to perform studies using these resources.

Keywords: Parkinson disease; Quebec Parkinson Network; biobank; registry.

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Conflict of interest statement

ZGO reports consultation fees from Lysosomal Therapeutics Inc. (LTI), Idorsia, Denali, Prevail Therapeutics, Inception Sciences (Ventus), all outside the submitted work. AD received research grants from Flamel Ireland Limited, Pfizer, Canopy Growth, Biron as well as honoraria from speaking engagements from UCB and Biogen. None of the financial disclosures is relevant to the submitted work. RBP reports personal fees from Takeda, Roche/Prothena, Teva Neurosciences, Novartis Canada, Biogen, Boehringer Ingelheim, Theranexus, GE HealthCare, Jazz Pharmaceuticals, Abbvie, Jannsen, and Otsuko, all outside the submitted work.

All other authors have no conflict of interests to report.

Figures

Fig.1
Fig.1
Quebec Parkinson Network (QPN) workflow for collection of patient data. Patients with PD or healthy controls who are recruited to the QPN Participant Registry must complete the QPN Questionnaire. Active members of the QPN Participant Registry may be selected for participation in QPN-facilitated research projects, such as the NeurO C-BIGR project which involves collection of blood samples for genetics and iPSCs derivation, as well as neuroimaging and neuropsychological data. Patient data collected through the QPN Questionnaire, medical records of patients in the QPN Participant Registry, and obtained via QPN-facilitated research projects are entered into the QPN databases.
Fig.2
Fig.2
Key demographic characteristics of patients in the Quebec Parkinson Network cohort. Data are presented for the 1070 patients with PD, except the following for which data were not available for all patients: age (n = 1056) and coffee consumption (n = 985). Family history of PD refers to having a mother, father, sibling, child, or other relation (uncle, aunt, cousin, niece, or nephew) with PD or PD-related disorder. Coffee consumption refers to current coffee drinkers and does not include former coffee drinkers. A history of smoking refers to current and former smokers.
Fig.3
Fig.3
Key clinical characteristics of patients in the Quebec Parkinson Network cohort. Data are presented for the 1070 patients with PD, except the following for which data were not available for all patients: age at symptom onset (n = 518), age at diagnosis (n = 921), modified Hoehn and Yahr stage (n = 637), postural instability (n = 697), tremor as presenting symptom (n = 863), rigidity as presenting symptom (n = 748), bradykinesia as presenting symptom (n = 787), and postural instability as presenting symptom (n = 724).
See this image and copyright information in PMC

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