C-BIG Repository: Information for patients

 

RECRUITMENT

Patients eligible for inclusion in the C-BIG Repository include:

  • Adults with neurological disease
  • Healthy Controls

Different material/data will be collected from participants based on:

  1. The nature of their disease
  2. The clinical procedures and interventions required as part of their clinical care.
  3. The nature of the material/data needed and allowed to be collected from healthy controls.

The C-BIG Repository will participate in diverse projects touching on all areas of neurological disease. The long-term goal is to develop a comprehensive collection of data and samples on a diverse array of neurological conditions, helping to contribute to global translational neuroscience research.

For more information, cbig.mni [at] mcgill.ca (email us)

COLLECTION OF PATIENT INFORMATION

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

  1. Blood
  2. Saliva
  3. Skin
  4. Cerebrospinal Fluid ( CSF)
  5. Brain/tumour tissue

Clinical Data

  1. With patient consent, health records can be reviewed to extract clinical information relevant to the patient’s condition.
  2. Disease-specific clinical worksheets will also be given to patients to capture precise disease-dependent information.
  3. 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

  1. Radiological data will be imported directly into the LORIS system from the clinical PACS system.
  2. 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.

 

PARTICIPANT WITHDRAWAL

Patient participation in the C-BIG Repository is entirely voluntary. Patients may withdraw from any study at any time and are not required to provide any reason for their decision. Withdrawing from a study will have absolutely no impact on a patient’s clinical care. If a patient elects to withdraw from the Repository, any materials collected that remain in the bank will be destroyed by the hospital as per current laboratory protocols.

The Repository may be unable to destroy materials that may have already been released for research at the time of the withdrawal request or any information generated from previously distributed samples.

For more information, cbig.mni [at] mcgill.ca (email us).

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OPEN SCIENCE EVENTS

There are currently no events available.

CONTACT US

C-BIG Repository
The Neuro
3801 University Street
Room NWB150 (lab)
Room NWB132/140 (offices)
Montreal, Quebec
H3A 2B4
Tel: (514) 398-8439
Email: cbig.mni [at] mcgill.ca

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The Neuro is a McGill research and teaching institute; delivering high quality patient care, as part of the Neuroscience Mission of the McGill University Health Centre. We are proud to be a Killam Institution, supported by the Killam Trusts.

 

 

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