About this trial
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.
Eligibility criteria
This trial accepts healthy volunteersQualifiers
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
Disqualifiers
None
Trial population
Any individual who has received a cancer diagnosis or has been a family caregiver or informal caregiver for someone diagnosed with cancer
Trial design
Case-only
Prospective
Treatments tested in this trial
Not listed
Trial groups
Trial outcomes
Primary outcomes
Self-reported quality of life measures
Participant self-reported symptoms and functioning will be measured using the Patient-Reported Outcomes Measurement Information System-Preference Score (PROMIS-Pr). Five domains assess symptoms with higher scores corresponding to worse symptomology (Depression; Anxiety; Pain Interference; Fatigue; Sleep Disturbance) and three assess function with lower scores corresponding to worse functioning (Physical Function; Ability to Participate in Social Roles and Activities; Cognitive Function). Participants rate each item with reference to the past seven days; function scales have no timeframe specified. Scale scores are converted to standardized T scores (mean = 50, SD = 10); normative reference groups are the U.S. general population, except Sleep Disturbance, where comparisons are to a mix of the U.S. population and people with chronic illness.
Sponsors and contacts
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