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).
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.
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.
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.
This assessment includes:
Applications will be evaluated by the Registry’s Scientific Committee according to the following conditions:
Improving the fight against breast cancer by increasing access to and participation in clinical research studies.
Website design and conception | Cobbox