Cargando…
The Quebec Parkinson Network: A Researcher-Patient Matching Platform and Multimodal Biorepository
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...
Autores principales: | , , , , , , , , , , , , , , , , , , , , , , , , , , , , |
---|---|
Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
IOS Press
2020
|
Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7029361/ https://www.ncbi.nlm.nih.gov/pubmed/31868683 http://dx.doi.org/10.3233/JPD-191775 |
_version_ | 1783499153355046912 |
---|---|
author | Gan-Or, Ziv Rao, Trisha Leveille, Etienne Degroot, Clotilde Chouinard, Sylvain Cicchetti, Francesca Dagher, Alain Das, Samir Desautels, Alex Drouin-Ouellet, Janelle Durcan, Thomas Gagnon, Jean-François Genge, Angela Karamchandani, Jason Lafontaine, Anne-Louise Sun, Sonia Lai Wing Langlois, Mélanie Levesque, Martin Melmed, Calvin Panisset, Michel Parent, Martin Poline, Jean-Baptiste Postuma, Ronald B. Pourcher, Emmanuelle Rouleau, Guy A. Sharp, Madeleine Monchi, Oury Dupré, Nicolas Fon, Edward A. |
author_facet | Gan-Or, Ziv Rao, Trisha Leveille, Etienne Degroot, Clotilde Chouinard, Sylvain Cicchetti, Francesca Dagher, Alain Das, Samir Desautels, Alex Drouin-Ouellet, Janelle Durcan, Thomas Gagnon, Jean-François Genge, Angela Karamchandani, Jason Lafontaine, Anne-Louise Sun, Sonia Lai Wing Langlois, Mélanie Levesque, Martin Melmed, Calvin Panisset, Michel Parent, Martin Poline, Jean-Baptiste Postuma, Ronald B. Pourcher, Emmanuelle Rouleau, Guy A. Sharp, Madeleine Monchi, Oury Dupré, Nicolas Fon, Edward A. |
author_sort | Gan-Or, Ziv |
collection | PubMed |
description | 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. |
format | Online Article Text |
id | pubmed-7029361 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2020 |
publisher | IOS Press |
record_format | MEDLINE/PubMed |
spelling | pubmed-70293612020-03-04 The Quebec Parkinson Network: A Researcher-Patient Matching Platform and Multimodal Biorepository Gan-Or, Ziv Rao, Trisha Leveille, Etienne Degroot, Clotilde Chouinard, Sylvain Cicchetti, Francesca Dagher, Alain Das, Samir Desautels, Alex Drouin-Ouellet, Janelle Durcan, Thomas Gagnon, Jean-François Genge, Angela Karamchandani, Jason Lafontaine, Anne-Louise Sun, Sonia Lai Wing Langlois, Mélanie Levesque, Martin Melmed, Calvin Panisset, Michel Parent, Martin Poline, Jean-Baptiste Postuma, Ronald B. Pourcher, Emmanuelle Rouleau, Guy A. Sharp, Madeleine Monchi, Oury Dupré, Nicolas Fon, Edward A. J Parkinsons Dis Research Report 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. IOS Press 2020-01-13 /pmc/articles/PMC7029361/ /pubmed/31868683 http://dx.doi.org/10.3233/JPD-191775 Text en © 2020 – IOS Press and the authors. All rights reserved https://creativecommons.org/licenses/by/4.0/ This is an open access article distributed under the terms of the Creative Commons Attribution (CC BY 4.0) License (https://creativecommons.org/licenses/by/4.0/) . |
spellingShingle | Research Report Gan-Or, Ziv Rao, Trisha Leveille, Etienne Degroot, Clotilde Chouinard, Sylvain Cicchetti, Francesca Dagher, Alain Das, Samir Desautels, Alex Drouin-Ouellet, Janelle Durcan, Thomas Gagnon, Jean-François Genge, Angela Karamchandani, Jason Lafontaine, Anne-Louise Sun, Sonia Lai Wing Langlois, Mélanie Levesque, Martin Melmed, Calvin Panisset, Michel Parent, Martin Poline, Jean-Baptiste Postuma, Ronald B. Pourcher, Emmanuelle Rouleau, Guy A. Sharp, Madeleine Monchi, Oury Dupré, Nicolas Fon, Edward A. The Quebec Parkinson Network: A Researcher-Patient Matching Platform and Multimodal Biorepository |
title | The Quebec Parkinson Network: A Researcher-Patient Matching Platform and Multimodal Biorepository |
title_full | The Quebec Parkinson Network: A Researcher-Patient Matching Platform and Multimodal Biorepository |
title_fullStr | The Quebec Parkinson Network: A Researcher-Patient Matching Platform and Multimodal Biorepository |
title_full_unstemmed | The Quebec Parkinson Network: A Researcher-Patient Matching Platform and Multimodal Biorepository |
title_short | The Quebec Parkinson Network: A Researcher-Patient Matching Platform and Multimodal Biorepository |
title_sort | quebec parkinson network: a researcher-patient matching platform and multimodal biorepository |
topic | Research Report |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7029361/ https://www.ncbi.nlm.nih.gov/pubmed/31868683 http://dx.doi.org/10.3233/JPD-191775 |
work_keys_str_mv | AT ganorziv thequebecparkinsonnetworkaresearcherpatientmatchingplatformandmultimodalbiorepository AT raotrisha thequebecparkinsonnetworkaresearcherpatientmatchingplatformandmultimodalbiorepository AT leveilleetienne thequebecparkinsonnetworkaresearcherpatientmatchingplatformandmultimodalbiorepository AT degrootclotilde thequebecparkinsonnetworkaresearcherpatientmatchingplatformandmultimodalbiorepository AT chouinardsylvain thequebecparkinsonnetworkaresearcherpatientmatchingplatformandmultimodalbiorepository AT cicchettifrancesca thequebecparkinsonnetworkaresearcherpatientmatchingplatformandmultimodalbiorepository AT dagheralain thequebecparkinsonnetworkaresearcherpatientmatchingplatformandmultimodalbiorepository AT dassamir thequebecparkinsonnetworkaresearcherpatientmatchingplatformandmultimodalbiorepository AT desautelsalex thequebecparkinsonnetworkaresearcherpatientmatchingplatformandmultimodalbiorepository AT drouinouelletjanelle thequebecparkinsonnetworkaresearcherpatientmatchingplatformandmultimodalbiorepository AT durcanthomas thequebecparkinsonnetworkaresearcherpatientmatchingplatformandmultimodalbiorepository AT gagnonjeanfrancois thequebecparkinsonnetworkaresearcherpatientmatchingplatformandmultimodalbiorepository AT gengeangela thequebecparkinsonnetworkaresearcherpatientmatchingplatformandmultimodalbiorepository AT karamchandanijason thequebecparkinsonnetworkaresearcherpatientmatchingplatformandmultimodalbiorepository AT lafontaineannelouise thequebecparkinsonnetworkaresearcherpatientmatchingplatformandmultimodalbiorepository AT sunsonialaiwing thequebecparkinsonnetworkaresearcherpatientmatchingplatformandmultimodalbiorepository AT langloismelanie thequebecparkinsonnetworkaresearcherpatientmatchingplatformandmultimodalbiorepository AT levesquemartin thequebecparkinsonnetworkaresearcherpatientmatchingplatformandmultimodalbiorepository AT melmedcalvin thequebecparkinsonnetworkaresearcherpatientmatchingplatformandmultimodalbiorepository AT panissetmichel thequebecparkinsonnetworkaresearcherpatientmatchingplatformandmultimodalbiorepository AT parentmartin thequebecparkinsonnetworkaresearcherpatientmatchingplatformandmultimodalbiorepository AT polinejeanbaptiste thequebecparkinsonnetworkaresearcherpatientmatchingplatformandmultimodalbiorepository AT postumaronaldb thequebecparkinsonnetworkaresearcherpatientmatchingplatformandmultimodalbiorepository AT pourcheremmanuelle thequebecparkinsonnetworkaresearcherpatientmatchingplatformandmultimodalbiorepository AT rouleauguya thequebecparkinsonnetworkaresearcherpatientmatchingplatformandmultimodalbiorepository AT sharpmadeleine thequebecparkinsonnetworkaresearcherpatientmatchingplatformandmultimodalbiorepository AT monchioury thequebecparkinsonnetworkaresearcherpatientmatchingplatformandmultimodalbiorepository AT duprenicolas thequebecparkinsonnetworkaresearcherpatientmatchingplatformandmultimodalbiorepository AT fonedwarda thequebecparkinsonnetworkaresearcherpatientmatchingplatformandmultimodalbiorepository AT ganorziv quebecparkinsonnetworkaresearcherpatientmatchingplatformandmultimodalbiorepository AT raotrisha quebecparkinsonnetworkaresearcherpatientmatchingplatformandmultimodalbiorepository AT leveilleetienne quebecparkinsonnetworkaresearcherpatientmatchingplatformandmultimodalbiorepository AT degrootclotilde quebecparkinsonnetworkaresearcherpatientmatchingplatformandmultimodalbiorepository AT chouinardsylvain quebecparkinsonnetworkaresearcherpatientmatchingplatformandmultimodalbiorepository AT cicchettifrancesca quebecparkinsonnetworkaresearcherpatientmatchingplatformandmultimodalbiorepository AT dagheralain quebecparkinsonnetworkaresearcherpatientmatchingplatformandmultimodalbiorepository AT dassamir quebecparkinsonnetworkaresearcherpatientmatchingplatformandmultimodalbiorepository AT desautelsalex quebecparkinsonnetworkaresearcherpatientmatchingplatformandmultimodalbiorepository AT drouinouelletjanelle quebecparkinsonnetworkaresearcherpatientmatchingplatformandmultimodalbiorepository AT durcanthomas quebecparkinsonnetworkaresearcherpatientmatchingplatformandmultimodalbiorepository AT gagnonjeanfrancois quebecparkinsonnetworkaresearcherpatientmatchingplatformandmultimodalbiorepository AT gengeangela quebecparkinsonnetworkaresearcherpatientmatchingplatformandmultimodalbiorepository AT karamchandanijason quebecparkinsonnetworkaresearcherpatientmatchingplatformandmultimodalbiorepository AT lafontaineannelouise quebecparkinsonnetworkaresearcherpatientmatchingplatformandmultimodalbiorepository AT sunsonialaiwing quebecparkinsonnetworkaresearcherpatientmatchingplatformandmultimodalbiorepository AT langloismelanie quebecparkinsonnetworkaresearcherpatientmatchingplatformandmultimodalbiorepository AT levesquemartin quebecparkinsonnetworkaresearcherpatientmatchingplatformandmultimodalbiorepository AT melmedcalvin quebecparkinsonnetworkaresearcherpatientmatchingplatformandmultimodalbiorepository AT panissetmichel quebecparkinsonnetworkaresearcherpatientmatchingplatformandmultimodalbiorepository AT parentmartin quebecparkinsonnetworkaresearcherpatientmatchingplatformandmultimodalbiorepository AT polinejeanbaptiste quebecparkinsonnetworkaresearcherpatientmatchingplatformandmultimodalbiorepository AT postumaronaldb quebecparkinsonnetworkaresearcherpatientmatchingplatformandmultimodalbiorepository AT pourcheremmanuelle quebecparkinsonnetworkaresearcherpatientmatchingplatformandmultimodalbiorepository AT rouleauguya quebecparkinsonnetworkaresearcherpatientmatchingplatformandmultimodalbiorepository AT sharpmadeleine quebecparkinsonnetworkaresearcherpatientmatchingplatformandmultimodalbiorepository AT monchioury quebecparkinsonnetworkaresearcherpatientmatchingplatformandmultimodalbiorepository AT duprenicolas quebecparkinsonnetworkaresearcherpatientmatchingplatformandmultimodalbiorepository AT fonedwarda quebecparkinsonnetworkaresearcherpatientmatchingplatformandmultimodalbiorepository |