Researchers

Registry Utilization

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).

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 the local oncology database (called SARDO).

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Variables

In addition to the variables entered in the Registry, for a specific research project that would require it, the data can be completed through the Dossier Santé Québec and the RAMQ (Régie de l’assurance maladie) file.

Type of request

Request for analyses of data included in the Registry according to 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 biostatistical analyses results will be returned to the applicants.

Request to identify potential participants for a research project requiring additional data or for a clinical trial.

These requests will be evaluated by the Registry’s Scientific Committee, according to the criteria mentioned below before the application is accepted. 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.

Your request

FEASIBILITY ASSESSMENT

This assessment includes:

  • An estimate of the number of patients who meet the inclusion and exclusion criteria of your project.
  • An overview of the quality and completeness of the available data variables needed for the project.
  • When possible, information on missing data and possible data imputations.

PROJECT REVIEW BY SCIENTIFIC COMMITTEE FORM

Applications will be evaluated by the Registry’s Scientific Committee according to the following conditions:

  • The project submitted is considered scientifically valid and is in line with the objectives of the Registry; 
  • The data necessary for the project completion are present (or searchable) in the Registry for a sufficient number of participants.
  • A research ethics board approves the project.