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Request NumberRequest TypeResearcher Name (Requester)Principal Investigator (if applicable)Institution/OrganizationProject TitleProject DescriptionSpecific C-OPN Resource Utilized/Date PromotedContact
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1DataHelena DenisDr. Francesca CicchettiCHUQLes vésicules extracellulaires dérivées d'érythrocyte: biomarqueurs de la maladie de ParkinsonLa maladie de Parkinson (MP) est une maladie neurodégénérative qui résulte de la mort lente et progressive de certains groupes de neurones dans le cerveau. Comme la zone du cerveau atteinte par la maladie joue un rôle important dans le contrôle de nos mouvements, les personnes atteintes souffrent de rigidité, de lenteur, de tremblements mais aussi, à l’occasion, de problèmes cognitifs. À l'échelle mondiale, la maladie est diagnostiquée chez plus de 300 000 personnes chaque année. A l’heure actuelle, aucun traitement n’est disponible pour guérir la maladie et le diagnostic demeure complexe. Nous avons donc pour objectif de développer un outil de diagnostic de la MP grâce à un prélèvement sanguin. Mon projet porte plus spécifiquement sur l’étude et la caractérisation des vésicules extracellulaires (VE) présentes dans le plasma d’individus souffrant de la MP et leurs contrôles appariés. En effet, toutes les cellules vivantes, y compris les cellules sanguines, ont la capacité de libérer des VE composées de protéines, de lipides et de composantes cellulaires. Au cours d’une étude pilote que nous avons réalisé, les échantillons d’une cohorte de 60 patients et 37 contrôles ont été récoltés et différentes sous-populations de VE quantifiées dans le plasma. Ces analyses ont révélé des différences significatives entre la quantité de VE dérivées d’érythrocyte entre patients et contrôles, laquelle corrèle avec le stade d’évolution de la maladie. De même, des analyses préliminaires des protéines contenues dans des VE ont permis de révéler que 8 protéines étaient différemment modulées chez les patients, comparativement aux sujets contrôles. Ces résultats préliminaires doivent maintenant être reproduits sur de plus grandes cohortes de patients comprenant 200 patients contrôles et 200 patients atteints de la MP afin de prouver la robustesse de nos biomarqueurs. Les résultats pourraient également mener à l’identification de nouvelles avenues thérapeutiques ciblant plus spécifiquement le système immunitaire.MDS-UPDRSfrancesca.cicchetti@crchudequebec.ulaval.ca
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2DataDr. Juan LiDr. Michael SchlossmacherOttawa Hospital Research Institute (OHRI)/ University of OttawaValidation of the PREDIGT Score for the Incidence of Parkinson's Disease compared to Healthy SubjectsWe previously created and published the PREDIGT Score model as a simple-to-use formula to calculate the incidence of Parkinson disease (PD) based on five known risk categories: Exposome as the sum of environmental exposures (E); genetic susceptibility (DNA variants; D); the presence of tissue changes from documented gene-environment Interactions (I); sex/Gender (G); and age, as in the passage of Time (T). We had further proposed (and modeled) that a final risk score can be calculated by assigning values to each category, as computed by the formula: PR=(E+D+I)xGxT. We also created a 2-step version for population screening purposes. In Step 1, a preliminary risk score was generated based on self-reported answers from validated questionnaires, followed by Step 2, in which the result from one objective clinical assessment (out of seven tested) was used for final classification. The PREDIGT Score has been assessed using two established case-control cohorts: DeNoPa and PPMI. The results demonstrate a promising performance of the original PREDIGT Score in distinguishing newly diagnosed Parkinson’s patients from healthy controls without reliance on a motor examination. To further assess the model’s discriminative performance, especially in Canadian population, we apply access to the C-OPN dataset and CaPRI and QPN cohorts, for both PD patients and healthy controls. Control data from CaPRI and QPN are crucial to our study to assess the score differences between PD patients and controls, and effect sizes of included risk modulators. The study is the secondary use of de-identified data (self-reported questionnaires, interview responses, and demographic information). All data will be stored in an OHRI owned, password protected computer and can only be accessed and analyzed by research staffs (PI: Michael Schlossmacher, MD; co-Investigator and methodologist: Juan Li, PhD). This study is approved by TOH Ethics Board (OHSN-REB): 20180010-01H, renewal of the study protocol has recently been approved by OHSN-REB.Demographic, epidemiological, clinical and clinical medications questionnaires; MDS-UPDRS results, BAI and BDI resultsmschlossmacher@toh.ca
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3DataDr. Iris KatholDr. Oury MonchiUniversity of CalgaryPD-MBI-GENThe proposed study is a secondary data analysis in the Parkinson’s disease population. No study visits will be conducted in this study. Data for the MBI-C which is available in English or in Québecois French, as appropriate, and blood sample collection will be done via the CaPRI and C-OPN protocols. The total and sub-scores for the MBI-C will be correlated to the genetic analyses to work on the following hypotheses: Hypothesis 1: Specific genetic mutations that are associated with neuropsychiatric or cognitive symptoms in PD can be related with the total score and sub-scores of the MBI-C. Hypothesis 2: Exploratory study using molecular inverted probes will reveal novel associations between genotypes and neuropsychiatric functions assessed by the MBI-C.The main data requested is the MBI-C questionnaire that is implemented by the Calgary and Québec C-OPN sites. In addition, we would like the following information from the demographic, clinical and medications questionnaires: Sex, year of birth, age at time of data collection, confirmation of PD diagnosis, date of diagnosis, Hoehn & Yahr stage, neurological co-morbidity, and medication. All idiopathic PD patients aged 50 and older are eligible to be in this study. Agreed to monthly update of data until they have reached their minimum recruitment goal of 500 participants.oury.monchi@umontreal.ca
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4DataIbukun OjoDr. Fang Ba and Dr. MyasakiUniversity of AlbertaEthnic and Gender Disparities in Access to Deep Brain Stimulation SurgeryThe goal of this project is to address the racism and discrimination in access to deep brain stimulation (DBS) in people with Parkinson’s disease (PD). DBS is a safe and well-established treatment. Our preliminary data showed marked disparities in DBS recipients, with 66% being men and 90% being European descent. The current project aims to assess the factors that have led to a skewed DBS population, including physician, systemic barriers and individual racial, gender and socioeconomic biases. We will investigate the systemic barriers that prevent all qualified patients from accessing this important treatment with equity. We will: 1) Analyze the gender, ethnicity, age, education and socioeconomic differences in access to DBS; 2) Identify the physician, systemic and individual racism, gender bias and socioeconomic factors that limit the access for referral to DBS, 3) Proceed with community engagement to improve the discrepancies in access to DBS.Data requested: DBS surgery date, sex, ethnicity, age (at time of questionnaire, at time of surgery), country of birth, native language, highest level of education, marital status, living environment (rural, urban), working environment (rural, urban), diagnosis (PD, PPS, etc…), access to DBS (if available)fb@ualberta.ca
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5DataDr. James McVittieDr. James McVittieUniversity of ReginaProject looks at survival analysis methodologies for combining different types of cohort data (incident & prevalent cohorts primarily) and modelling measurement error in reported onset dates. The goals of the research project are to improve survival estimates for diseases in which data from multiple cohort studies may be available and to understand how uncertainty in onset dates for disease with insidious onset processes, such as Parkinson's disease, may be incorporated into the survival analysis modelling procedures.Member accessing LORIS databaseJames.McVittie@uregina.ca
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6Data and MaterialGP2 TeamDr. Andrew SingletonNIHGlobal Parkinson’s Genetics Program (GP2)Global Parkinson’s Genetics Program (GP2) is an ambitious program to genotype >150,000 volunteers around the world to further understand the genetic architecture of Parkinson’s disease (PD). GP2 will perform genotyping on C-OPN DNA samples. DNA will be processed and extracted at the MNI (overseen by Dr. Ziv Gan-Or). The DNA samples will be shipped frozen to the NIH where they will be genotyped on the Illumina Infinium Global Diversity Array (GDA) with the NeuroBooster custom content. This will be used for genome-wide association studies (GWAS, e.g. PD case-control GWAS) but also possibly other analyses (e.g. PD progression GWAS). Further analysis may also be done with the genotyping data including potentially whole genome sequencing. However, no other genotyping is planned at the moment. Following data generation and initial quality control, GP2 data will be returned directly to C-OPN and made available to GP2 members in the shared GP2 workspace. Following complete quality control and data processing, data will be positioned in community-facing platforms for data sharing (for example AMP-PD, https://amp-pd.org/).DNA and de-identified datasingleta@mail.nih.gov
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7Data and MaterialDr. Aarnoud van der SpoelDr. Aarnoud van der SpoelDalhousie UniversityMeasuring a Parkinson’s biomarker in white blood cellsThe enzyme glucocerebrosidase (GBA) is a biomarker for Parkinson's disease. Individuals with low GBA activity are overrepresented among Parkinson’s patients. Measuring GBA activity can help diagnose Parkinson's patients, and possibly forecast how fast their disease will progress. In addition, measuring GBA activity can identify which Parkinson’s patients may benefit from new, GBA-enhancing therapies, and can establish the efficacy of such therapies. To measure GBA activity, various methods are being used, but these methods are not consistent or accurate. We have developed a method to measure GBA activity more accurately and have tested this method in cells grown in our laboratory. We now want to evaluate our new method for measuring GBA activity in white blood cells (peripheral blood mononuclear cells, PBMCs) from healthy individuals (to be obtained from STEMCELL Technologies) and from patients with Parkinson's disease (from C-OPN). Our new method may be more accurate in establishing the GBA status of Parkinson’s patients, allowing for better forecasts of disease progression. In addition, our new method may improve the ability to establish the efficacy of GBA-enhancing therapies.6 PMBC samplesspoela@dal.ca
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8Data and MaterialMeron TeferraDr. Ziv Gan-OrMcGill UniversityThe genetics of REM sleep behavior disorder, Parkinson’s disease and other synucleinopathiesIn this project we will continue the work we have been doing with QPN, by performing targeted sequencing of ~50 genes that are known or suspected to be involved in PD and similar disorders, including GBA1, LRRK2, SNCA, PRKN and others. Just like with QPN, the genetic data will be shared back with C-OPN, and C-OPN can decide to share it further with anyone who applies to get it and approved by C-OPN. We will use the data to perform association studies between variants in these genes and risk for PD and different PD phenotypes such as age at onset, symptoms etc. Together with the samples, we request simple demographic data including age at onset of PD, age at diagnosis of PD, age at enrollment to the study and sex.502 DNA Samplesziv.gan-or@mcgill.ca
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9Data and MaterialCatherine DeryDr. Nicolas Dupré and Dr. Manon BouchardCHU de Québec - Université Laval Research CentreAssociation between levodopa-carbidopa dose, plasma vitamin B6 deficiency and polyneuropathy in patients with a parkinsonian syndrome: data from the Canadian Open Parkinson NetworkRecently, researchers have observed an association between levodopa-carbidopa dose and plasma vitamin B6 levels in Parkinson's disease patients. B6 deficiency could be induced by the catabolism of levodopa, which requires this vitamin as a cofactor. Vitamin B6 deficiency in the blood could potentially lead to polyneuropathy (i.e. simultaneous dysfunction of numerous peripheral nerves). Our team is planning to analyze data of participants from the Canadian Open Parkinson Network to better understand the potential relationship between levodopa-carbidopa, plasma vitamin B6 deficiency and polyneuropathy. Through this project, we hope to direct the attention of the scientific and medical community toward this poorly studied subject. Our results will contribute to improving the treatment of Parkinson's disease patients through a better understanding of clinical manifestations potentially associated with levodopa-carbidopa intake.Data and blood samplesnicolas.dupre@chudequebec.ca
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10DataAurélie de Rus Jacquet; C-OPN TeamDr. Francesca CicchettiCHUQClinical perception and management of Parkinson's disease during the COVID-19 pandemic: A Canadian experienceLink to publication: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8407944/COVID-19 Questionnaireaurelie.jacquet@crchudequebec.ulaval.ca
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11RegistryDr. Chrystalina AntoniadesDr. Chrystalina AntoniadesOxford UniversityOnline population study on time perception in Parkinson's disease and aged populationParkinson’s disease is known to affect parts of the brain that are thought to be involved in perceiving the passage of time, but the nature and degree of any actual time perception problems that result is not well understood. The aim of this research is to determine whether time perception is altered in Parkinson’s disease (PD) and whether this can be accurately quantified. If so, measures of changes in time perception could potentially be used in future as a test that could help diagnose PD.Promoted May 2021Promoted May 2021
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12RegistryDr. Pierre-Yves TherriaultDr. Pierre-Yves TherriaultUniversité du Québec à Trois-RivièresL’utilisation de la domotique en ergothérapie : perception d’utilisateurs atteints de la maladie de ParkinsonLe projet concerne la perception d’utilisateurs atteints de la maladie de Parkinson de l’utilisation de la domotique au quotidien. La domotique se définit par l’ensemble des technologies d’un habitat qui apporte un soutien dans la réalisation de tâches et d’activités ou qui favorise un sentiment de sécurité, de confort ou d’autonomie. Nous nous intéressons à savoir quels aspects de ce type de technologie favorise votre soutien à domicile. Nous souhaitons également savoir comment celle-ci vous aide à réaliser vos activités de la vie quotidienne. Nous aimerions en savoir davantage sur les difficultés qui sont perçues lorsque vous utilisez la domotique.Promoted October 2021pierre-yves.therriault@uqtr.ca
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13RegistryDr. Silke CresswellDr. Silke CresswellUniversity of British ColumbiaTreating anxiety in Parkinson’s disease with a multi-strain probiotic – a randomized, placebo-controlled trialParkinson's disease (PD) is a complex condition that carries a high burden of neuropsychiatric comorbidities. About a third of individuals living with Parkinson's disease have one or more anxiety disorders, resulting in lower quality of life, greater care dependency, and increased caregiver burden. Gastrointestinal dysfunction is very common in Parkinson's. Constipation is experienced by the vast majority of patients and often manifests years before onset of motor symptoms, symptoms suggestive of irritable bowel syndrome are also commonly found in PD. Increased intestinal permeability has been demonstrated in PD. Impaired intestinal barrier function can lead to chronic systemic low-grade inflammation, which has been strongly associated with mood disorders. Several lines of evidence suggest a link between the gut microbiome and Parkinson's disease. In summary, given the high rate of anxiety in PD, the growing evidence that probiotics may improve anxiety and mood disorders in non-PD populations, and the strong links between the gut microbiome and PD, we will carry out a randomized, blinded, placebo-controlled study into the use of a multi-strain probiotic to improve anxiety and Parkinson's disease.Promoted April 2021silkec@mail.ubc.ca
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14RegistryDr. Madeleine SharpDr. Madeleine SharpMcGill UniveristyDeep cognitive endophenotyping of Parkinson’s disease: A platform development and pilot study.The purpose of this study is to use computer tests of cognitive function, inspired by the tests used in laboratory animals, to arrive at a better understanding of the mechanisms underlying cognitive symptoms in Parkinson’s disease.Promoted February 2022madeleine.sharp@mcgill.ca
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15RegistryDr. Ryan D'ArcyDr. Ryan D'ArcyUniversity of British ColumbiaMultimodal neuromodulation in individuals with Parkinson's DiseaseThe purpose of the study is to support the development of evidence-based treatments for Parkinson’s disease (PD) by exploring the effect of multimodal non-invasive neurostimulation paired with intensive physical therapy on motor function, cognition, and quality of life in individuals with PD. The results of this preliminary clinical study will inform the development of a larger scale trial investigating this novel multimodal neurostimulation intervention. This neurostimulation study includes translingual neurostimulation delivered using the PoNSTM device and galvanic vestibular stimulation (GVS), combined with a physical therapy program. The study will compare physical therapy alone to physical therapy + neurostimulation.Promoted July 2022rdarcy@sfu.ca
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16RegistryDr. Tejas SankarDr. Tejas SankarUniversity of AlbertaChanges in spinal reflexes used post-operatively as a biomarker for optimized treatment from deep brain stimulation in Parkinson's diseaseWe want to find a potential biomarker helpful for early PD detection, confirming the diagnosis, measuring disease progression, or serving as outcome measures in clinical trials. We will measure the activity of a muscle or group of leg muscles with electrode stickers placed on the skin over the muscle. These surface stickers have many recording contacts to measure the activity from all over the muscle. We want to characterize abnormalities identifiable in the recorded muscle activities by comparing the muscle activities from PD participants with collected data (similar condition) from healthy participants of the same age and sex. We also want to know how the muscle activity changes after clinical PD treatments, including medication and deep brain stimulation (DBS). In addition, our method for muscle activity recording can also tell us how the motor neurons in the spinal cord that activate the muscles are affected by PD.Promoted September 2022tsankar@ualberta.ca
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17RegistryDr. Richard Camicioli and Dr. Kelvin JonesDr. Richard Camicioli and Dr. Kelvin JonesUniversity of AlbertaStudy in Parkinson Disease of Exercise Phase 3 Clinical Trial: SPARX3SPARX3 is an NIH-funded, phase 3, multi-site, randomized, evaluator-masked, study of endurance treadmill exercise on changes in the MDS-UPDRS Part III score at 12 months. 370 participants will be randomly assigned to 2 groups: 1)60-65% HRmax or 2)80-85% HRmax 4 times per week. Secondary objectives will test hypotheses related to striatal specific binding ratio (SSBR) at 12 months, MDS-UPDRS Part III score, ambulatory mobility (6-minute walk), daily walking activity (steps), cognition, quality of life, cardiorespiratory fitness, blood-derived biomarkers of inflammation and neurotrophic factors at 12 and 18 months. Exploratory objectives will test hypotheses related to the effects of removing the study support that was provided over 18 months on the sustainability and durability of the exercise effects at 24 months.Promoted in November 2022rcamicio@ualberta.ca; k.e.jones@ualberta.ca
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18RegistryDr. Ayse KuspinarDr. Ayse KuspinarMcMaster UniversityDevelopment of a new health-related quality of life measure for Parkinson’s diseaseEvaluating health-related quality of life is important when measuring the costs and effects of a disease and its treatment. However, a limitation with existing quality of life questionnaires used to measure cost-effectiveness is that they are generic and do not reflect health concerns important to people with Parkinson's Disease (PD). Our research team has developed a new health-related quality of life questionnaire for people with PD, the Preference-Based PD Index (PB-PDI). The PB-PDI, which was developed through quantitative methods and cognitive debriefing with people with PD, includes 7 items with 4 response options each. The aim of this project is to generate preference weights for each item in the PB-PDI and develop a scoring algorithm. The Discrete Choice Experiment methodology, which involves presenting respondents two scenarios and asking them to choose the one they prefer, will be used to determine how important each item is from the perspective of people with PD. This information will help generate preference weights and a scoring algorithm for the PB-PDI.Promoted in February 2023kuspinaa@mcmaster.ca
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19RegistryDr. Penny MacDonaldDr. Penny MacDonaldUniversity of WesternEstablishing definitive MRI diagnostic testing of Parkinson's diseaseNo difinitive diagnostic test of PD currently exists. This imaging biomarker will be tested in PD, atypical PD (such as MSA, PSP, CBS, ET) as well as matched controls. Positive results will enable research to evaluate true disease-modifying therapies more precisely and quickly, and empower physicians to start medications in PD more promptly and manager earlier stages of disease.Spring 2023penny.macdonald@gmail.com
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20RegistryDr. Martin McKeownDr. Martin McKeownUniversity of British ColumbiaDevelopment of a new health-related quality of life measure for Parkinson’s diseaseThe long-term goal of this research program is to create privacy-compliant automated assessment of Parkinson’s Disease (PD) based on machine learning algorithms applied to video recordings. Development of such a tool will:
• Facilitate the remote assessment of people with PD
• allow for quantification of disease severity for clinical trials
• empower people with PD to be able to track their own disease.
• Streamline visits in the clinic, allowing for the clinician to focus on other factors that may affect quality of life (e.g. non-motor symptoms);
• allow for non-expert clinicians to automatically assess disease severity
To accomplish this long-term goal, a large-scale, multi-centered, high-quality movement video dataset from patients with PD needs to be established. Crucially, we are developing novel “labelling functions” that allow for automated labelling of most of the videos, with manual labels by clinical experts only reserved for “difficult” cases.
We are using a UBC-sanctioned privacy-compliant means to capture the remote video data (Qualtrics Survey). (Note: while we are using Qualtrics Survey as an online vehicle to remotely capture data, the “survey” here is not a set of questions, but actually a sequence of video instructions and a means to capture video of people performing simple tasks such as finger tapping, providing different facial expressions, etc.)
Spring 2023martin.mckeown@ubc.ca
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21RegistryDr. Kathryn LambertDr. Ada LeungUniversity of AlbertaExamining the contribution of executive functions to motor imagery ability in people with Parkinson's disease and healthy older adultsThis research project is a part of my doctoral thesis. I will be examining the relationship between executive function in Parkinson’s Disease and the ability to imagine movements. Participants will be asked to meet with the researcher twice in person to complete a battery of tests that assess mood, cognition, motor function, and motor imagery ability. The purpose of the project is two fold. First, understanding the relationship between these two domains may provide further insight into how executive function affects motor planning/control in Parkinson’s Disease, as motor imagery is highly intertwined with the execution of physical movements. Second, motor imagery training is of increasing interest as a rehabilitation tool. The results of this study will indicate whether individuals with executive dysfunction are appropriate for such training (as imagery ability can determine training benefits). August 2023kjlamber@ualberta.ca
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