Discover the Cancer Experience Registry

TON May 2016 Vol 9 No 3 - Supportive Care
Cassandra J. Hammond, RN, MSN, CRNP
Clinical Educator
Quintiles, Inc
Sharpsburg, MD

I am pleased to showcase the Cancer Experience Registry, a unique resource for the cancer community that I recently learned about.1 This great program from the Cancer Support Community (CSC) provides evidence-based data about the emotional, social, physical, and financial issues patients and caregivers face.

As an educator, I consider myself in touch with services offered by and for the cancer community, but I was surprised to learn that the Cancer Experience Registry existed. I think you will agree that this is a valuable resource for your patients, and an important tool to expand the knowledge and awareness of the entire cancer community. I urge you to refer patients and caregivers to CancerExperienceRegistry.org; read on to find out why!

What Is the Cancer Support Community?

For those of you who are not familiar with this registry, the CSC is the biggest nonprofit network of cancer support in the world. It is led by professionals, and devoted to ensuring that all people impacted by cancer are empowered by knowledge, strengthened by action, and sustained by community.2 The organization delivers education, support services, and tools, and conducts advocacy and research initiatives.

The Research and Training Institute (RTI), which is part of CSC, is the first institute of its kind dedicated to psychosocial, behavioral, and survivorship research.3 RTI shares its research findings with the cancer community, and uses these data to enhance CSC’s programs and services.

I feel especially passionate about RTI’s Cancer Experience Registry, which is a forum for the individual narratives and collective voice of all people with cancer.4 Launched in 2013, the Registry, which is confidential and free, now has >8000 patient and caregiver participants. Any patient diagnosed with cancer can join the Registry at any point in their journey. There is a general Registry for all patients with cancer, and specific programs are available for people with metastatic breast cancer, multiple myeloma, chronic myeloid leukemia, lung cancer, chronic lymphocytic leukemia, prostate cancer, melanoma, gastric cancer, as well as for caregivers.

The surveys are created with the help of advisory groups that include patients, clinicians, psychosocial and medical researchers, patient advocates, and industry. Today, this web-based tool provides the opportunity to follow patient and caregiver experiences over time and analyze aggregated data across cancer types to learn about the similarities and differences of individuals impacted by cancer.1 The questions can also be answered using paper surveys to ensure that as many cancer patients and caregivers as possible have the opportunity to participate.

“The more participants there are in the Registry, the more we can work together for needed change to better support cancer patients and caregivers,” explained Joanne Buzaglo, PhD, Senior Vice President, RTI, CSC, Philadelphia, PA. “That’s why it’s vital that participants, advisors, partners, and colleagues help us get the word out to grow the Registry.”

How Can Patients and Caregivers Register?

The easy registration process takes a few minutes, and involves 3 steps: (1) read and agree to the Registry’s informed consent and privacy policy, (2) submit an e-mail address, and select caregiver status or a diagnosis, and (3) complete your account profile and provide a few additional details.5

People who enroll in the Registry can create a personal page, customize their experience, and ensure they have access to important information, updates, and opportunities to connect with others who share their concerns. Members can get immediate feedback online, showing them how others have responded.

Conclusion

CSC is committed to sharing data with the cancer community,2 and RTI collaborates with advisors, clinicians, industry, and researchers to analyze and report Registry data and findings.4 RTI research has been presented at many conferences, including the American Society of Clinical Oncology Annual Meeting, American Society of Hematology Annual Meeting, American Psychosocial Oncology Society Annual Conference, Association of Oncology Social Work Annual Conference, San Antonio Breast Cancer Symposium, World Congress of Psycho-Oncology, National Comprehensive Cancer Network Annual Conference, and American Public Health Association’s Annual Meeting and Exposition.6

I hope that you will encourage your patients and their caregivers to enroll in the Cancer Experience Registry, provide their perspectives, and ultimately benefit the cancer community.

References

1. Cancer Support Community. About the Cancer Experience Registry. www.cancerexperienceregistry.org/about. Accessed March 14, 2016.
2. Cancer Support Community. Mission & vision and history. www.cancersupportcommunity.org/mission-vision-and-history. Accessed March 14, 2016.
3. Cancer Support Community. About the Research and Training Institute (RTI). www.cancersupportcom munity.org/our-research/research-training-institute. Accessed March 14, 2016.
4. Cancer Support Community. The Cancer Experience Registry. www.cancersupportcommunity.org/our-research/research-training-institute#tab3. Accessed March 14, 2016.
5. Cancer Support Community. Join the Cancer Experience Registry. www.cancerexperienceregistry.org/join- cancer-experience-registry. Accessed March 15, 2016.
6. Cancer Support Community. Publications & presentations. www.cancersupportcommunity.org/publications-presentations. Accessed March 15, 2016.

Last modified: May 24, 2016