Breast cancer registry collects data from patients

TORONTO – Breast Cancer Canada (BCC) has announced PROgress Tracker, a first-of-its-kind knowledge base registry that will collect experiences from breast cancer patients and survivors with intentions to inform research, policy and future care of Canadian breast cancer patients.

PROgress Tracker Breast Cancer Registry is a knowledge-based research study collecting Patient Reported Outcomes (PRO) data through the use of questionnaires from diverse experiences of breast cancer participants from diagnosis, treatment and surveillance over the course of time. People diagnosed with breast cancer at any stage, during any period of their journey will complete questionnaires four times a year to share their individual experience and outcomes of breast cancer across Canada. The data will be collected into a database for researchers and clinicians to analyze large population responses and learn more about breast cancer issues and improvements from the patient perspective.

“This research will be able to capture the patient voice, your experience, and be able to bring full circle – treatment, diagnosis, and the patient voice to be able to breast cancer treatment and management in Canada,” said Shaniah Leduc (pictured), chair, Board of Directors, Breast Cancer Canada.

As this is a research study, it is governed by a Research Ethics Board and requires participants to sign consent to participate in the study, provide demographic information about themselves and their breast cancer, and complete questionnaires every three months. All personal information is kept strictly confidential. Participants responses to the questionnaires are not shared with their doctor or medical care team.

People that are eligible to participate in PROgress Tracker include:

• Female or male, 18 years old, at the time of informed consent
• Having a diagnosis of stage 0 (DCIS) to IV breast cancer according to the TNM system classification of breast cancer1
• Breast cancer must be confirmed by histological classification following breast biopsy and/or surgical resection of primary or metastatic lesion
• Being able to give electronic, informed consent (or have a legal representative who can give electronic informed consent when applicable)
• Be able to complete questionnaires in English or French
• Be able to accept and respond to email communications

The minimal length of duration of the registry will be 10 years with the possibility of extension. The study will collect PROs data from participants over 10-year period every four months. Participants can stop being in the study at any time.

Learn more by reading the additional information provided here or contacting a Breast Cancer Canada volunteer to answer your questions at tracker@breastcancerprogress.ca.