What will be collected?
Upon informed consent and determined eligibility, participants of the C-BIG Repository may be asked to provide one or more of the following sample types, depending on their condition:
Biological Material
- Blood
- Saliva
- Skin
- Cerebrospinal Fluid (CSF)
- Brain/tumour tissue
Clinical Data
- With patient consent, health records can be reviewed to extract clinical information relevant to the patient’s condition.
- Disease-specific clinical worksheets will also be given to patients to capture precise disease-dependent information.
- Patients will determine whether the Clinical Research Coordinator (CRC) may use their Dossier de Santé du Québec (DSQ) to add clinical information to the database.
- All of this data will be stored without patient identifiers.
Radiological Data
- Radiological data will be imported directly into the LORIS system from the clinical PACS system.
- Patients will determine whether DSQ images could be coded and added to the LORIS database.
Study Results
Researchers will be encouraged to submit the results of experiments that were generated with biological material obtained from the Repository back to the C-BIG Repository.
Examples of assays include, but are not limited to, DNA sequencing, quantification of protein expression, RNA-expression, micro-RNA expression, and functional response assays.
The C-BIG Repository acknowledges that the nature of these assays may change with time, and with the advent of new technologies. Consent forms will be accordingly updated so that patients are informed of the possible risks associated with these assays (ex. patient identification through sequencing results).
Note: All procedures for material/data collection will be performed by personnel that are both qualified and authorized by their employer/institution to perform the procedures. The procedures will be performed, at minimal, to the standards expected in the context of clinical care.
