WASHINGTON, D.C., Jan. 10, 2022 (GLOBE NEWSWIRE) -- The Cancer Support Community is proud to release the updated Cancer Experience Registry (CER), an online survey that has captured the voices of nearly 17,000 patients, caregivers, and survivors for nearly 10 years.
When the CER first launched, there were about 12 million cancer survivors in the United States. Today there are nearly 17 million, plus many more friends and family who provide them informal care. Over the next decade, more people will be diagnosed with cancer than ever before. At the same time, navigating cancer care has become increasingly complex. Advances in cancer treatment have led to many more treatment options. A global pandemic has caused unusual delays in diagnosis and care.
To keep pace, the updated CER has added exciting new capabilities while continuing its mission to capture the broad entirety of today’s cancer experience including the emotional, physical, practical, and financial impact of cancer.
- Follow-up surveys capture the insights of patients and caregivers over two years providing financial compensation to those who take part. Capturing the views of patients and caregivers over time will provide critical insights into cause-and-effect relationships between key aspects of the cancer experience and patient outcomes.
- Data from patients and their caregivers can be linked to study how the caregiver experience influences patient well-being and how the patient experience influences caregiver well-being. Further, questions will explore how patients and caregivers are aligned and not aligned in their needs.
- Patients, caregivers, and survivors can complete the survey on their phone, tablet, or computer and start and stop when they like.
“Cancer treatment is changing every day—and we can lose sight of how treatment affects people impacted by cancer,” said Heather Badt, Executive Director of the Cancer Support Community’s Research and Training Institute. “The updates to CER reflect our commitment to gathering timely and relevant data that puts those living with cancer at the center of all cancer conversations.”
The CER remains open to anyone who has been diagnosed with cancer, regardless of a specific diagnosis, plus now houses specialty questions tailored to 14 specific diagnoses. The CER also has a unique caregiver specific registry open to anyone who has been a family caregiver or informal caregiver for someone diagnosed with cancer. This gives all people impacted by cancer a platform by which they can share back their experiences.
CSC has partnered with many partners, collaborators, and funding organizations, including the MDS Foundation, Inc., and for the first time in this release has included questions related to Myelodysplastic Syndromes (MDS).
To date, CSC has leveraged findings from the CER in ways including directly informing the development of patient supportive care and educational materials addressing:
- Distress screening and referral
- Quality of life and financial burden
- Understanding cancer clinical trials
- Treatment decision-making
- Managing the symptoms and side effects of cancer and its therapies
- Policy and advocacy efforts to address the rising costs of cancer care and their associated burden.
The CER results will continue to be used by health care workers, researchers, and policymakers to enact change. These new and important insights can create better outcomes for this generation of patients, caregivers, and survivors, and the next.
About the Cancer Support Community
As the largest professionally led nonprofit network of cancer support worldwide, the Cancer Support Community (CSC), including its Gilda’s Club affiliates, is dedicated to ensuring that all people impacted by cancer are empowered by knowledge, strengthened by action, and sustained by community. CSC achieves its mission through three areas: direct service delivery, research, and advocacy. The organization’s Institute for Excellence in Psychosocial Care includes an international network of affiliates that offer the highest quality social and emotional support for people impacted by cancer, as well as a community of support available online and over the phone. The Research and Training Institute conducts cutting-edge psychosocial, behavioral, and survivorship research. CSC furthers its focus on patient advocacy through its Cancer Policy Institute, informing public policy in Washington, D.C. and across the nation. For more information, please call the toll-free Cancer Support Helpline at 888-793-9355, or visit www.CancerSupportCommunity.org.
Nathalie Casthely Cancer Support Community 917-572-4517 ncasthely@cancersupportcommunity.org