Philadelphia, Pennsylvania 19131


The Cancer Experience Registry®: An Online Initiative 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.

Study summary:

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


Inclusion Criteria: - Having received a cancer diagnosis or caring for someone with cancer Exclusion Criteria:



Primary Contact:

Principal Investigator
Joanne Buzaglo, PhD
Cancer Support Community

Joanne Buzaglo, PhD
Phone: 2672953001

Backup Contact:

Alexandra Zaleta, PhD
Phone: 2672953004

Location Contact:

Philadelphia, Pennsylvania 19131
United States

Joanne Buzaglo, PhD
Phone: 267-295-3001

Site Status: Recruiting

Data Source:

Date Processed: June 25, 2018

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