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Patient Representative: Sylvie Desmarais

Supporting the CCTG Breast Disease Site Committee

Resides in Longueuil, QC | CCTG Patient Representative since 2022


"It is important to me that the patient can be a full member of the care and research teams. The patient's experience of the disease and its treatment is a rich complement to the scientific and contextual data. This is why I want to bring my voice and that of the patients to improve their participation in clinical trials, to support hope and the arrival of new treatments especially for metastatic cancers. Time is running out for us..."

In November 2019, Sylvie was diagnosed with metastatic breast cancer which was truly a bombshell since she had no symptoms that hinted at such a diagnosis. Chemotherapy treatments stabilized the progression of the cancer and allowed her to maintain a good quality of life and she is currently participating in a clinical trial for a new treatment. Sylvie is a retiree after more than 35 years in the Quebec Health and Social Services and after 15 years in senior management positions in various organizations responsible for promoting the quality of services and the efficient use of resources. She has a keen interest in research and innovative practices as well as in the development and implementation of quality services.

"Unfortunately, clinical trials are still often not well known to patients and barriers to participation persist. Patients need to be well informed about the possibilities and benefits of participating in a clinical trial. Each barrier must be considered to help the patient make an informed decision. As a patient representative, I find it important to demystify and promote participation in clinical trials."