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Cancer Experience Registry (CER) for Cancer Patients and Caregivers
NCT02333604 · Cancer Support Community, Research and Training Institute, Philadelphia
In plain English
Click the button to translate this study into plain language — what it is, who qualifies, and what participation looks like.
Official title
Cancer Experience Registry: An Online Survey Research Study to Understand the Experiences of Cancer Patients and Caregivers
About this study
The aims of the Registry are to: 1) better understand the psychosocial experiences and needs of people who have been impacted by cancer, including patients, survivors and caregivers; 2) inform the research community, healthcare providers, patient advocates and policy makers around gaps in care and the psychosocial challenges of people affected by cancer; 3) use the findings to develop and disseminate tailored (data-guided) programs and services that will address the emotional and social needs and ultimately improve the long-term quality of life of people affected by cancer; 4) link registrants to cancer related resources and programs via an online, modifiable platform; and 5) provide collaborating sites (e.g., hospitals/health networks/CSC affiliates) with aggregated reports on quality and needs of members or customers to enhance or improve quality of care.
Findings from the Registry are disseminated online at https://www.cancersupportcommunity.org/sites/default/files/file/2020-07/CSC\_Registry\_Report\_June\_2020.pdf
Eligibility criteria
Inclusion criteria:
* Have received a cancer diagnosis or have been a family caregiver or informal caregiver (i.e., a relative or friend) for someone diagnosed with cancer
* Live in United States, a US territory, or Canada
* Able to read and understand English
Exclusion criteria:
* None
Study design
Enrollment target: 15000 participants
Age groups: adult, older_adult
Timeline
Starts: 2013-03
Estimated completion: 2035-12
Last updated: 2024-04-15
Primary outcomes
- • Self-reported quality of life measures (7 days)
Sponsor
Cancer Support Community, Research and Training Institute, Philadelphia · other
Contacts & investigators
ContactErica E. Fortune, PhD · contact · efortune@cancersupportcommunity.org · 202.659.9709
ContactKara Doughtie, PhD · contact · kdoughtie@cancersupportcommunity.org
InvestigatorErica E. Fortune, PhD · principal_investigator, Cancer Support Community
All locations (1)
Cancer Support Community Research & Training InstituteRecruiting
Washington D.C., District of Columbia, United States