Increase HOPE in patients
Hope means never giving up. We want to give hope and support to anyone affected by cholangiocarcinoma. This is why we have a dedicated C3 "Research Navigator" whose role is to help patients navigate through their journey with cancer. This includes assisting patients participate in C3 initiatives and opportunities such as:
C3 HOPE
International Cholangiocarcinoma Patient Registry (ICPR)
The Cholangiocarcinoma Foundation (CF), in partnership with Invitae Ciitizen™ (www.ciitizen.com/about), hosts the International Cholangiocarcinoma Patient Registry (ICPR), which is a collaborative effort between patients and the global research community. The registry can be accessed by patients directly or caregivers when patients have died and consent is provided online. The ICPR collects and stores medical records, including any mutational reports, for individual patient use, while using machine learning and natural language processing to create anonymized data sets for research.
The International Cholangiocarcinoma Patient Registry (ICPR) is a collaborative effort between patients and the global research community. Patients can participate in unique and urgent research efforts by sharing your de-identified health records.
Today, the registry includes over 2,000 patients but only 6 Canadians are registered. This difference is because in the U.S., collecting and uploading records is undertaken by Invitae Ciitizen™, through a Health Insurance Portability and Accountability Act (HIPAA) compliant process. This process in not established in Canada and thus patients must collect and upload their own records. Unfortunately, this means that Canadians have a missed opportunity to understand the disease landscape of our nation and to add our data to the international community.
We are working with Invitae Ciitizen™ to streamline the process of obtaining medical records on behalf of consenting patients or their caregivers within Canada so that Canadian patients are also able to benefit from the advantages of the platform without the added work of adding their medical records directly .
National Multidisciplinary Cholangiocarcinoma Rounds
Multidisciplinary rounds (MDR) give patients the opportunity to have their case presented to a panel of healthcare experts who will discuss their recommendations for treatment options and highlight important educational points along the way. These rounds will help spread awareness and increase education of healthcare professionals, to keep them informed on the latest breakthroughs in the treatment of cholangiocarcinoma. The C3 BTC Rounds will be chaired by Dr. Rachel Goodwin, and will include an expert Molecular Oncologist (Dr. Arif Awan), GI pathologist (Dr. Catherine Forse), Abdominal Radiologist (Dr. Cynthia Walsh), as well as medical and Surgical Oncologists from across Canada. The recommendations and clinical trial suggestions that result from the MDRs will be summarized and provided to both the patient and their oncologists.
Clinical Trial info sessions and trial matching
Feeling overwhelmed when trying find information about clinical trials for your cancer?
Unsure if your local Oncologist is familiar with the latest research options available to you?
The C3 Research Navigator is here to be BTC clinical trials expert in Canada and will work with you and our network of BTC researchers/medical professionals to help you access Molecular Testing and determine eligible clinical trials in North America. In addition, the C3 will host regular educational sessions on clinical trials to educate on what research trials are, why they are important, what do the different clinical trial phases mean, what happens during a research study and how the research team protects you.
Access to Molecular Testing
Funding for molecular testing continues to be a key barrier for Canadian BTC patients, despite the clear benefits molecular testing provides for the patient. This is why one of the C3 mandates is to increase access to molecular testing for Canadian BTC patients so that they can receive a certified clinical report to identify mutations that can be targeted with targeted therapeutics. We are advocating for this to become part of the Standard of Care for BTC patients and are in the process of establishing the means and infrastructure to offer this across Canada.
C3 Hope Study
Based on the Hope Theory, "hope" not only includes a goal (what one hopes for, i.e., “hope value”), but also having the agency and a pathway to achieve it. Individuals affected by cancer hope for different things at different stages of their journey and understanding what patients hope for can help the cancer care team to counsel patients about treatment decisions. Patients who understand that they have a terminal diagnosis continue to hope for cure, even when the chance is nearly non-existent. Clinical trials are sometimes perceived by patients as the pathway to achieve their “hope value” of cure but clinicians and researchers worry about this being “false hope” leading to decisional regret. We will explore hope values and levels of hope from C3 patient members to gauge if the C3 programs and initiatives enhance hope levels, and whether that leads to tangible outcomes.
