The Cancer Experience Registry: Hearing the Patient’s Voice, Making a Difference
Why do people facing cancer enroll in clinical trials? What does “value” mean to patients making decisions about their care? What is the impact of financial toxicity on people who undergo cancer treatment? How do caregivers describe their experiences?
These are just a few of the important questions that the Cancer Support Community (CSC) explores through the Cancer Experience Registry. The Registry is a unique resource that provides cancer patients and caregivers with a place to identify the emotional, social and physical issues that impact their lives, connect with each other and assure that their voices are heard. The Registry, launched in 2013, now has over 8900 participants, individuals who make the commitment to filling out an extensive questionnaire about their experience at every stage of the cancer journey.
In addition to the general Registry, the Cancer Support Community has opened 11 special registries for people with specific cancer types, including breast cancer, metastatic breast cancer, melanoma, lung cancer, multiple myeloma, chronic myeloid leukemia, chronic lymphocytic leukemia, stomach (gastric) cancer, and prostate cancer. In addition, CSC recognized that family members and loved ones of people diagnosed with cancer represent an underserved and often unacknowledged community of people impacted by cancer. Therefore, it expanded the registry to include caregivers with an additional special registry for caregivers of people living with multiple myeloma. These special programs allow us to broaden and deepen our understanding of both the issues that people facing cancer share, and those that are more clearly a part of an increasingly complex, rapidly changing and diverse experience.
Just a few years ago, for example, patients with advanced melanoma had a grim prognosis. Today, they have multiple treatment options that offer the possibility of extended life, and even cures. Through the Registry, we learn how patients and caregivers communicate with their doctors about these new options and about the decision making process. We hear how they deal with uncertainty, the costs of treatment, long term side effects. By contrast, many patients with stomach cancers still face difficult courses of treatment and poor outcomes. They often feel isolated with these less common cancers. They need information on clinical trials and on ways to deal with the problems they encounter with nutrition or pain control. Men with prostate cancer have hard choices to make about their treatment, significant after effects of their treatment and more options for advanced cancers. Just as we now know that cancer is not a single disease, we also realize that the ways in which people experience their cancers is remarkably individual as well.
This work cannot be done alone. The Cancer Support Community partners with other advocacy organizations, health care providers, academics, policy makers, and industry. Findings from the Registry are shared broadly across the cancer community, including at professional conferences (e.g., American Society of Clinical Oncology, American Society of Hematology, NCCN, Association of Value-Based Cancer Care), through peer-reviewed articles, in the media, through our Index Report and most importantly to the patients and caregivers themselves participating in the Registry.
The Registry recognizes the power of every patient and caregiver’s story, but it also seeks to hear and communicate the collective voice of people impacted by cancer. We take what we learn and use it to better program and services, to enhance communications between doctors and patients and to improve the care and outcomes for people facing cancer everywhere.
To register or learn more about the Cancer Experience Registry, go to www.cancerexperienceregistry.org.
Make your voice heard. Connect. Share. Make a difference.
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