VARIABLES
The information in the Registry’s database relates to participants’ health status, including hospitalizations, diagnoses, medications, medical procedures and imaging, pathology, or laboratory results. It also contains demographic information (gender, age, ethnic origin, lifestyle).
For a specific research project requiring it, the data can be completed through the Dossier Santé Québec and the RAMQ (Régie de l’assurance maladie du Québec) file.
The variables that constitute the Registry were selected to allow answers to as many scientific questions as possible in the field of metastatic breast cancer, based on the existing data in SARDO.
Access an overview of variables included in the Registry.
TYPES OF REQUESTS
Request for analysis of data included in the Registry based on a specific research question.
These analyses will be possible after the request is reviewed by the Registry’s Scientific Committee, according to the criteria listed below. These analyses will be performed by a biostatistician from the Registry Management Team and only the results will be returned to the applicants.
Request to identify potential participants for a research project requiring additional data or for a clinical trial.
Before a request is accepted, it will be evaluated by the Registry’s Scientific Committee, according to the criteria mentioned below. The projects approved by the Scientific Committee will be managed locally by the centers where the potential participants are located (ethics submissions, identification of patients through the code key, contact and recruitment, conduct of the study). The participants’ consent form explicitly asks for permission to contact them for future research projects related to the Registry.
Please note that under no circumstances will the raw data be transmitted to the applicants; only the result of the requested analysis will be transmitted.
Requests will be evaluated by the Registry Scientific Committee based on the following conditions:
- The submitted project is considered scientifically valid and is in line with the purpose of the Registry;
- The data necessary for the project completion are present in the Registry and for a sufficient number of participants;
- The applicant accepts the conditions on use of data (confidentiality, costs, publication policy, etc.). These conditions are supported in a research agreement to be signed by the applicant;
- A Research Ethics Board approves the project.
YOUR REQUEST
Are you a researcher affiliated with a research center or government agency or pharmaceutical sponsor?
A form will soon be available indicating the steps to follow for a data analysis request.
Leave us your contact details below to be informed when this form becomes available online.
Please note that all information submitted using this form will be received by the Project Manager – Operations of the McPeak-Sirois Group. This information will remain confidential and will not be shared or disclosed in any way.
By submitting this form, you agree to receive communications from us when new features are available on the Registry site.
