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

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.

Analysis of Heterozygous PRKN Variants and Copy‐Number Variations in Parkinson's Disease

“…After excluding low‐sequencing‐quality samples and biallelic PRKN carriers, we performed statistical analysis on 6090 individuals: 2627 patients and 3463 controls. The three cohorts are presented in Table 1 and include (1) a cohort of European ancestry, confirmed by principal component analysis, collected at McGill University, including French‐Canadian (mostly recruited through the Quebec Parkinson Network) 35 and French participants recruited in Quebec, Canada, and Montpellier, France; (2) a cohort recruited at Columbia University, New York, as previously described, 36 primarily composed of individuals of self‐reported European origin and Ashkenazi Jews; and (3) a cohort collected at the Sheba Medical Center, Israel, of self‐reported Ashkenazi Jewish ancestry, as previously described 37 . PD was diagnosed by movement disorder specialists according to the UK Brain Bank Criteria, without excluding patients with positive family history 38 or the Movement Disorders Society Criteria 39 .…”

“…Using targeted next-generation sequencing and bioinformatic approaches, we fully sequenced PRKN to identify both SNVs and CNVs in a large cohort of PD, including LOPD and EOPD. 35 and French participants recruited in Quebec, Canada, and Montpellier, France; (2) a cohort recruited at Columbia University, New York, as previously described, 36 primarily composed of individuals of self-reported European origin and Ashkenazi Jews; and (3) a cohort collected at the Sheba Medical Center, Israel, of self-reported Ashkenazi Jewish ancestry, as previously described. 37 PD was diagnosed by movement disorder specialists according to the UK Brain Bank Criteria, without excluding patients with positive family history 38 or the Movement Disorders Society Criteria.…”

Olfactory bulb surroundings can help to distinguish Parkinson’s disease from non-parkinsonian olfactory dysfunction

“…We included 15 PD patients that were recruited through the Quebec Parkinson Network, and were diagnosed with PD according to the UK PD Society Brain Bank diagnostic criteria ( Litvan et al, 2012 ). Diagnosis ascertainment and clinical data were provided by the Quebec Parkinson Network ( Gan-Or et al, 2020 ). All patients were on stable anti-parkinsonian medication.…”

Targeted sequencing of Parkinson’s disease loci genes highlights SYT11, FGF20 and other associations

“…The study population included, consecutively recruited, unrelated patients with Parkinson's Disease (n=2,657) and controls (n=3,647) from three cohorts, collected at McGill University (Quebec, Canada and Montpellier, France), Columbia University (New York, NY, USA), and the Sheba Medical Center (Israel). The McGill cohort was recruited in Quebec, Canada (in part with the assistance of the Quebec Parkinson's Network (Gan-Or et al, 2020) (Alcalay et al, 2016). The Sheba cohort included 605 Parkinson's Disease patients (mean age 60.7±11.9, 62.3% male) and 534 controls (mean age 34.0±7.0, 55.8% male), all of full AJ origin; previously described in more details (Ruskey et al, 2019).…”