Objective: By creating a participant registry, gathering information on participants, and ensuring appropriate data exchange with research groups, the QPN’s primary goal is to increase collaboration between researchers, clinicians, and patients in order to advance research into Parkinson’s disease locally and internationally.

Background: In the province of Quebec, Eastern Canada, there was an urgent need to support researchers, clinicians and participants interested to advance our comprehension of the disease. Another challenge was to collect inclusive data from all patients’ group and ensure that they are well represented in large international studies.

Method: The QPN has established a collaborative approach between clinicians, researchers and participants to facilitate research. Recruitment of participants is advertised through several movement disorders clinics, patient advocacy groups and the media. Data collection included demographic, clinical and epidemiological questionnaires, blood draw, neuropsychological assessment (MoCA) and movement disorder evaluation (MDS-UPDRS). Follow-ups are made every 18 months. Biological samples are analyzed and stored in the C-BIGR biobank at the Neuro (Montreal Neurological Institute, affiliated to McGill University). Research participants are invited to answer different questionnaires over the phone or in-person, and clinical evaluations are done in-person.

Results: Since its creation in 2013, we have recruited 1972 participants; 1699 with PD, 273 controls and 35 with RBD for which we have demographic, clinical and epidemiological questionnaires. Biological information for 1040 PD, 132 controls and 35 RBD. MoCA for 425 PD, 60 controls, 3 RBD. Motor evaluation for 355 PD and 10 RBD. With all those data, the network has supported over 120 research projects by either sharing data collected among the network or sharing lists of participants (registry). The QPN is interested in ensuring the use of these research assets through Open Science practices.

Conclusion: Promoting the collaboration between clinicians, researchers and participants has been a successful approach to support Parkinson’s research as the number of projects using our database and biobank is constantly growing. We are presently interested in forming alliances with academic organizations, pharmas and research teams that have comparable objectives.

« Back to 2023 International Congress

MDS Abstracts - https://www.mdsabstracts.org/abstract/the-quebec-parkinson-network-qpn-interdisciplinary-collaboration-in-parkinsons-disease-and-related-disorders-research/