Breast Cancer Canada (BCC) has announced the launch of PROgress Tracker, an innovative knowledge base registry which aims to gather crucial experiences and insights from patients and survivors, contributing to the enhancement of research, policy development, and future care for Canadian breast cancer patients.
The PROgress Tracker Breast Cancer Registry is a knowledge-based research study dedicated to gathering Patient Reported Outcomes (PRO) data using questionnaires. The registry will encompass a diverse range of experiences from breast cancer participants, chronicling their journey from diagnosis, through treatment, and surveillance over time.
Participants, irrespective of their stage or period in their journey, will complete questionnaires four times a year, enabling them to share their individual experiences and outcomes related to breast cancer across Canada.
The collected data will be compiled into a database, allowing researchers and clinicians to analyze comprehensive population responses, gaining valuable insights into issues and improvements from a patient-centric perspective.
Shaniah Leduc Chair of the Board of Directors at Breast Cancer Canada, emphasized, “This research will capture the patient voice, enabling a comprehensive understanding of your experiences and, in turn, drive enhancements in breast cancer treatment and management in Canada.”
In alignment with the principles of rigorous research, PROgress Tracker is governed by a Research Ethics Board, ensuring ethical guidelines and participant protection. Eligible participants are required to provide informed consent, demographic information, and complete questionnaires every three months.
All personal information remains strictly confidential, and participants’ responses to the questionnaires are not shared with their medical care team.
Individuals eligible to participate in the PROgress Tracker include those aged 18 years or older, regardless of gender, with a diagnosis ranging from stage 0 (DCIS) to IV.
Participants should confirm their diagnosis through histological classification following breast biopsy and/or surgical resection of the primary or metastatic lesion. Additionally, participants should be able to provide electronic informed consent, complete questionnaires in English or French, and respond to email communications.
The registry is planned for a minimum duration of 10 years, with the potential for extension. Over this period, the study will collect PROs data from participants every four months, offering a comprehensive understanding of the breast cancer journey. Participants have the flexibility to discontinue their participation in the study at any time.
To learn more about the PROgress Tracker registry and how you can contribute to the advancement of breast cancer research, please visit the additional information provided here or reach out to Breast Cancer Canada at firstname.lastname@example.org.
The Health Insider applauds this initiative and other like it that aim to advance cancer research and facilitate better outcomes. The collection and analyses of patient feedback and experiences should never be overlooked and often offer some of the most valuable insights that are helpful to both researcher and patient alike.
If you’re aware of other data collection initiatives designed to advance disease research in Canada, please let us know at email@example.com.