Cancer Experience Registry for Patients and Caregivers

This is an observational study called the Cancer Experience Registry. It's designed to understand the experiences of people affected by cancer, including patients and their caregivers. There are no specific interventions (like new medications) being tested; instead, participants will complete online surveys. The main goal is to measure your self-reported quality of life, which will be assessed at 7 days. You can join if you are 18 or older, live in the US or Canada, can read English, and have either been diagnosed with cancer or are a caregiver for someone with cancer. The study aims to enroll 15,000 people, but its current recruitment status is unclear.

Study design
This is an observational study, meaning it collects information without testing a specific treatment. It plans to include up to 15,000 participants.
What's involved
Participants will complete online surveys. The time commitment for these surveys is not specified.
Compensation
Not stated in the trial record.
Follow-up
Your quality of life will be measured at 7 days after completing the surveys.

AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.

NCT02333604

Cancer Experience Registry (CER) for Cancer Patients and Caregivers

Recruiting
Not specifiedAges 18+Observational
Cancer Support Community, Research and Training Institute, Philadelphia
~15,000 participants
Updated 2026-04-23 on ClinicalTrials.gov

At a glance

Recruiting sites
1 of 1 listed site is recruiting right now
RecruitingSuspended, closed, or not yet open
What they're measuring
Self-reported quality of life measures
Measured over 7 days
Neoplasms
Cancer
Caregiver
1 sites across 1 states
District of Columbia1
  • Erica E. Fortune, PhD · PRINCIPAL_INVESTIGATOR · Cancer Support Community

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Do you actually qualify for this trial?

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Eligibility criteria

Inclusion

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

None
  • Self-reported quality of life measures7 days

    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.