Responsible for the database
Dr. Ronald Postuma, MD, MSc
Dr. Jean-François Gagnon, Ph.D
Dr. Jacques Montplaisir, Ph.D
Dr. Oury Monchi, Ph.D
Objectives
One of the network’s objectives is to centralize the maximum amount of data related to any project on Parkinson’s disease. The interest of this centralization is to promote the sharing of data and thus optimize the projects in terms of the number and variety of available data.
- These data will be grouped and centralized using the database software LORIS: Longitudinal Online Research and Imaging System
- This system was developed at the Montreal Neurological Institute (The Neuro) and has been used in numerous studies.
- Modular system allows the integration of all aspects of a multi-site study: data acquisition, storage, processing and dissemination.
Modalities of data sharing
Basic data
Using the Quebec Parkinson Network resources implies that you agree to communicate specific primary data that you will have acquired during your project.
The primary data requested, if obtained during the research project, are included in the final contact form.
These data will be centralized and transmitted to the researcher’s members of the network who request it. The sharing of this data is not subject to the approval of the researcher who collected it.
Additional data
You can also communicate to the Quebec Parkinson Network any data you wish to share:
- Clinical and behavioural data
- Imaging data
- Data from the analysis of biological material – will be stored in The Neuro’s biobank and subject to The Neuro’s biobank management and sharing policy
For all of these data, you will have the option to choose between two sharing options:
- Open-access data – may be shared with any network member researcher who requests it. The researcher will be notified if a request is made to share the data to foster potential collaborations.
- Controlled data – the researcher who collected the data will be notified if a request is made for sharing the data and will be able to control the sharing of the data until the first publication. After publication, all data will be open to all researchers who request it from the QPN and meet the access conditions.
Terms of access to data
Documents to be submitted to obtain data stored in the epidemiological, clinical and neuropsychological databases of Quebec Parkinson Network:
- Fill out the “data request” form, indicating the data you wish to obtain
- Send, if applicable, your selection criteria for these data (age of participants, stage of the disease, etc.)
- A copy of the ethics approval letter (or scientific review)
Note: Some data are subject to the information and authorization of the principal investigator