Clinical trial NCT02333604: Cancer Experience Registry (CER) for Cancer Patients and Caregivers
Official title: Cancer Experience Registry: An Online Survey Research Study to Understand the Experiences of Cancer Patients and Caregivers
Study type: OBSERVATIONAL
Overall status: RECRUITING
Conditions: Neoplasms
Cancer
Caregiver
Keywords: cancer
cancer survivorship
psychosocial needs
cancer experience
acute myelogenous leukemia
breast cancer
breast cancer, metastatic
chronic lymphocytic leukemia
chronic myeloid leukemia
liver cancer
lung cancer
melanoma
multiple myeloma
myelodysplastic syndrome
ovarian cancer
prostate cancer
stomach cancer
bladder cancer
colorectal cancer
patient insights
Lead sponsor: Cancer Support Community, Research and Training Institute, Philadelphia
Sponsor class: OTHER
First posted: 2015-01-07
Enrollment: 15000
Sex: ALL
Minimum age (years): 18
Standard ages: ADULT
OLDER_ADULT
Accepts healthy volunteers: yes
Observational model: CASE_ONLY
Time perspective: PROSPECTIVE
Sampling method: NON_PROBABILITY_SAMPLE
Study population: Any individual who has received a cancer diagnosis or has been a family caregiver or informal caregiver for someone diagnosed with cancer

Brief summary: The Cancer Experience Registry®: An Online Survey Research Study to Understand the Experiences of Those Impacted By a Cancer Diagnosis. The Registry is a web-based platform to distribute cross-sectional and longitudinal surveys. Study surveys are designed based on input from advisor experts, including patients and caregivers, and focus on the social, emotional, physical, financial and decision-making experiences of those who have been diagnosed with cancer and their caregivers. Findings contribute toward enhancing care for patients, survivors and caregivers via programming and policy initiatives.

Detailed description: 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

Primary outcomes:
measure: Self-reported quality of life measures
timeFrame: 7 days
Secondary outcomes:
Other outcomes:
Locations:
city: Washington
country: United States
facility: Cancer Support Community Research & Training Institute
state: District of Columbia
Study officials:
affiliation: Cancer Support Community
name: Erica E. Fortune, PhD
role: PRINCIPAL_INVESTIGATOR
References: