The Cancer Experience Registry (CER) survey uncovers the emotional, physical, practical, and financial impact of cancer so patients and caregivers receive the support they need. By taking the survey, you join thousands of others in helping to:

Influence

Influence health care policies

enhanced_cancer_care-svg

Enhance cancer care

improve support

Improve support services

Learn More About the Registry

 

Hear from People Like You

Paul Patient Registry Participant

“Their surveys go below the clinical data. They broaden the experience, and they get to the emotional, mental and spiritual aspects.”

Lynn Caregiver Registry Participant

“The Registry helped me a lot … I feel very safe, I open up."

Nikki Patient Registry Participant

“It is so easy to use .... It feels safe. It feels authentic; and I feel that they are using my story for the greater good.” 

Key Learnings

Patient Emotional Needs

More than half of caregivers surveyed reported did not feel prepared to care for patient’s emotional needs (Caregiver Registry, 2020)

Missed Job Opportunities

1 out of 3 breast cancer patients surveyed reported missed job opportunities or career advancement (Patient Registry, 2020)

Depression

4 out of 10 patients surveyed were at risk for clinically significant depression (Patient Registry, 2020)

Discussion

Nearly 3 of 4 patients surveyed said no one from their care team talked to them about the cost of their care (Patient Registry, 2020)

To view the latest findings, read the full report

Read Now

Frequently Asked Questions

What is the Cancer Experience Registry? The Cancer Experience Registry (CER) is an online research survey that helps enhance cancer care, improve health care policies, and ensure support services better reflect the needs of people affected by cancer. 
Who can take the survey? The CER is open to any adult who has been diagnosed with cancer at any point in their life or has been a family or informal caregiver to someone with cancer. Participants must live in the United State, a U.S. territory, or Canada and be able to read and understand English.
How long is the survey? The survey will take about 35 minutes to complete. Your results will be saved as you go, so you are able to start and stop as you need.
What happens to the results? Your insights, along with the insights of other patients and caregivers, are shared with the broader cancer community to make positive changes. For example, this information helps to:
  • Enhance cancer care
  • Improve support services
  • Influence health care policies
How do I take the survey? Start taking the survey from your computer or mobile device. Your results will be saved as you go, so you are able to start and stop as you need.
What kind of questions will be asked? The survey captures the details of your cancer experience. The questions are designed to understand the emotional, physical, practical, and financial experiences of patients and caregivers to provide a deeper understanding of the impact of cancer.
If I stop the survey before I complete it, how do I get back in? You can start and stop the survey at any point. Simply use the unique link and personalized pin number emailed to you to pick up where you left off. You cannot re-enter the survey through the survey home page.
What about my privacy? The survey is an Institutional Review Board (IRB) approved research study, which means that the confidentiality, rights, and welfare of participants are protected.
Is there a cost to take part? No, there is no cost to take part in this research.
What is the benefit to taking part? By generously giving your time for this important research, your contributions help deliver better outcomes for those impacted by cancer, now and in the future. 

To date, findings from the CER survey have helped inform the development of patient supportive care and education in areas such as:
  • 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.

By gathering the important insights of those affected by cancer through the CER survey, we can create better outcomes for patients and caregivers today, and for future generations.
What happens when I’ve finished the survey? Once you complete the survey, you become part of a registry of patients and caregivers with the opportunity to complete follow-up surveys that track changes over time, or additional surveys that ask about emerging topics in cancer care. 

 

Cancer Support Community

The Cancer Experience Registry (CER) is an online research study that uncovers the broad impact of cancer through a 35-minute survey of patients and caregivers. The survey focuses on multiple aspects of cancer to understand its emotional, physical, practical, and financial impact, so we can identify and address gaps in care and influence outcomes such as survival, quality of life and health care cost.

By gathering the important insights of those affected by cancer through the CER survey, we can create better outcomes for patients and caregivers today, and for future generations.

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