Actively Recruiting
Cancer Experience Registry: An Online Survey Research Study to Understand the Experiences of Cancer Patients and Caregivers
Led by Cancer Support Community, Research and Training Institute, Philadelphia · Updated on 2026-04-23
15000
Participants Needed
1
Research Sites
47 weeks
Total Duration
On this page
AI-Summary
What this Trial Is About
Researchers are conducting an online survey study called the Cancer Experience Registry to better understand the experiences of people affected by cancer, including patients, survivors, and caregivers. The aim is to explore the social, emotional, physical, financial, and decision-making challenges faced by these individuals. The study also seeks to inform healthcare providers, advocates, and policy makers to improve care and develop supportive programs. Participants complete surveys through a web-based platform that collects information on their psychosocial experiences and needs. The Registry is designed with input from experts, patients, and caregivers, and it allows tailored programs and services to be developed based on the collected data. The platform also links participants to cancer-related resources and provides aggregated reports to healthcare networks to enhance care quality. During the study, participants will report their quality of life over recent days through questionnaires. The research team uses this self-reported data to understand the long-term quality of life and challenges faced by people impacted by cancer. The study started in 2013 and continues to collect information, aiming to improve support services and care policies for cancer patients and their caregivers.
CONDITIONS
Brief Title
Cancer Experience Registry (CER) for Cancer Patients and Caregivers
Who Can Participate
Eligibility Criteria
You may qualify if you...
- 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
- Aged 18 years or older
You will not qualify if you...
History of severe allergic reactions to study medication Currently pregnant or breastfeeding Recent participation in another clinical trial within the last 30 days Presence of uncontrolled medical conditions that could affect safety
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Your Study Journey
Duration - 2 to 4 weeks
Participants are screened for eligibility to participate in the trial.
1 visit (online)
Duration - 7 days
Participants complete online surveys to report on their quality of life and psychosocial experiences related to cancer.
1 online survey session
Duration - Up to 12 years
Participants may be observed over time to gather ongoing data on their experiences and needs related to cancer.
Periodic online surveys as available
Trial Site Locations
Total: 1 location
1
Cancer Support Community Research & Training Institute
Washington D.C., District of Columbia, United States, 20015
Actively Recruiting
Research Team
E
Erica E. Fortune, PhD
K
Kara Doughtie, PhD
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
0
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