The Cancer Support Community's Research and Training Institute and The Leukemia & Lymphoma Society have together launched the Cancer Experience Registry: Chronic Myeloid Leukemia (CML)—CancerExperienceRegistry.org. The project is an extension of the general Cancer Experience Registry, a global online survey that collects information about the experiences of people living with cancer to better understand the social and emotional needs of those patients.
“CML patients are living longer, fuller lives due to treatment advances, but we believe that survivorship comes with an array of physical and psychosocial issues. Patients will tell us more about these issues and their impact through the Cancer Experience Registry,” Louis DeGennaro, PhD, LLS's Chief Mission Officer, said in a news release.
Patients who participate will answer a series of questions about their experiences including questions about the patient-medical team dialogue, side effect management, cancer care planning, financial concerns, and the emotional and social effects of their cancer experiences. Participants will instantly be able to compare their responses with those of others in the community after completing the survey—as well as be connected to support and resources that meet their needs from the two organizations.
Pfizer Oncology is the inaugural sponsor of the registry, and continues to provide funding.