Cancer Experience Registry: An Online Initiative to Understand the Experiences of Those Impacted by a Cancer Diagnosis
| Status: | Recruiting |
|---|---|
| Conditions: | Cancer, Cancer |
| Therapuetic Areas: | Oncology |
| Healthy: | No |
| Age Range: | 18 - Any |
| Updated: | 3/22/2019 |
| Start Date: | March 2013 |
| End Date: | December 2035 |
| Contact: | Kevin Stein, PhD, FAPOS |
| Email: | kstein@cancersupportcommunity.org |
| Phone: | 2672953009 |
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.
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.
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
www.CancerSupportCommunity.org/RegistryIndexReport2017
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
www.CancerSupportCommunity.org/RegistryIndexReport2017
Inclusion Criteria:
- Having received a cancer diagnosis or caring for someone with cancer
Exclusion Criteria:
We found this trial at
1
site
Philadelphia, Pennsylvania 19131
Phone: 267-295-3009
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