Cancer Experience Registry (CER) for Cancer Patients and Caregivers

Cancer Clinical Trial

— CER  

Official title:

Cancer Experience Registry: An Online Survey Research Study to Understand the Experiences of Cancer Patients and Caregivers

Clinical Trial Details — Status: Recruiting

Administrative data

• NCT number: NCT02333604
• Other study ID #: Salus IRB # 23044
• Status: Recruiting
• Start date: March 2013
• Est. completion date: December 2035

Study information

• Verified date: April 2024
• Source: Cancer Support Community, Research and Training Institute, Philadelphia
• Contact: Erica E. Fortune, PhD
• Phone: 202.659.9709
• Email: efortune[@]cancersupportcommunity.org
• Is FDA regulated: No
• Study type: Observational [Patient Registry]

Clinical Trial 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.

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_J une_2020.pdf

Recruitment information / eligibility

• Status: Recruiting
• Enrollment: 15000
• Est. completion date: December 2035
• Est. primary completion date: January 2035
• Accepts healthy volunteers: Accepts Healthy Volunteers
• Gender: All
• Age group: 18 Years and older

Eligibility

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

Related Conditions & MeSH terms

• Cancer
• Caregiver
• Neoplasms

Locations

Country	Name	City	State
United States	Cancer Support Community Research & Training Institute	Washington	District of Columbia

Sponsors (1)

Lead Sponsor	Collaborator
Cancer Support Community, Research and Training Institute, Philadelphia

Country where clinical trial is conducted

United States, 

Outcome

Type	Measure	Description	Time frame	Safety issue
Primary	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.	7 days

External Links

•   The 2020 Registry Report highlights findings from the Cancer Experience Registry data