The Cancer Experience Registry
The Cancer Experience Registry is a unique online community that brings people impacted by cancer together to make their voices heard, connect with each other, share experiences, learn from and help others. Launched in 2013, the Registry now has over 8,000 participants, both patients and caregivers. The Registry is open to any individual impacted by cancer, at any stage of the journey. It is free and confidential. In addition to the general Registry, there are currently 11 special programs for people with specific cancer types, and for caregivers.
Participants can join the Cancer Experience Registry by filling out a simple registration form, and then a more detailed questionnaire. This questionnaire is a tool to think about and identify the emotional and social issues that impact an individual’s cancer experience. The Research and Training Institute uses the information from these surveys to improve the care for people with cancer and their caregivers, and to develop better programs and services for our community.
Individuals who enroll in the Cancer Experience Registry can create a personal page to customize their experience and assure they have access to important information, updates and opportunities to connect with other people who share their concerns.
Current specialty programs include:
- Multiple Myeloma Caregivers
- Metastatic breast cancer
- Gastric (stomach) cancer
- Chronic lymphocytic leukemia
- Chronic myelocytic leukemia
- Lung cancer
- Multiple myeloma
- Prostate cancer
What We Learned From You
Each month, we ask members of the Cancer Experience Registry to tell us about topics and issues that resonate with their personal cancer experience. Some of the answers are very candid and frank about topics such as what matters most to patients and caregivers, what they wish others knew about the cancer experience, and what issues they find most difficult to understand. We've compiled those answers so that others may benefit from their experiences.
The terms patient voice and patient-centered care have become buzz words in today’s rapidly changing health care world. But what does it really mean when you are sitting in your doctor’s office hearing that you have cancer, or being asked to make a crucial treatment decision? At that moment, you may just want the expert, your doctor, to tell you what is best.
But it is critical to remember that cancer treatment is a process, and has an impact on virtually every aspect of your life. Your values, the things that matter to you are very much a part of that process. The more actively you participate in making decisions about your care—the emotional and social aspects as well as the purely clinical—the more likely it is that your experience, and potentially your outcomes, will be better.
Your voice matters in assuring that you are heard in the decision-making process. In a broader and deeper sense, it also matters in helping to address the full spectrum of needs and issues that people impacted by cancer face. One voice becomes many, and those voices come together to shape the way cancer care is delivered, and to develop the programs and services that support people throughout their journeys.
Some people think of themselves as advocates, and take a very active role in making their voices heard. Others choose a quiet path. Regardless, your voice matters. One way to make sure it is heard is to join the Cancer Experience Registry.