Cancer Experience Registry: An Online Initiative to Change the Future of Cancer Care
The Cancer Support Community's (CSC) Research and Training Institute has created the Cancer Experience Registry: An Online Initiative to Change the Future of Cancer Care to identify and understand the emotional and social needs of cancer survivors. Armed with this knowledge, the investigators will raise awareness about and help develop programs to address the needs of cancer survivors. Anyone who has ever received a cancer diagnosis, whether recently diagnosed, in treatment, or years post-treatment can participate. Interested cancer survivors can register at www.cancerexperienceregistry.org
|Study Design:||Observational Model: Case-Only
Time Perspective: Cross-Sectional
|Official Title:||Cancer Experience Registry: An Online Initiative to Change the Future of Cancer Care|
- Self-reported quality of life measures [ Time Frame: 4 weeks ] [ Designated as safety issue: No ]
|Study Start Date:||March 2013|
|Estimated Study Completion Date:||February 2020|
|Estimated Primary Completion Date:||February 2015 (Final data collection date for primary outcome measure)|
This is a broad observational study conducted online at www.cancerexperienceregistry.org, or via pen and paper survey obtained by calling the cancer support helpline at 888-793-9355
Any individual who has ever received a cancer diagnosis, regardless of disease type, stage, treatment, and time since diagnosis, can take part in this study.
The online registry will allow CSC's Research and Training Institute to report annually on trends and changes in the emotional health status of cancer survivors. Such data collection and tracking will serve as the basis for increasing public awareness and in developing effective programs to address the often misunderstood and under served needs of cancer survivors. The registry will fill a critical gap by providing a mechanism to learn directly from cancer survivors what issues they face.
The Cancer Support Community's Research and Training Institute will disseminate an annual report to highlight the findings of the registry. The report will be available to the cancer community at large.
|Contact: Anne Morris, MPHfirstname.lastname@example.org|
|Contact: Joanne S Buzaglo, PhDemail@example.com|
|United States, Pennsylvania|
|Cancer Support Community Research & Training Institute||Recruiting|
|Philadelphia, Pennsylvania, United States, 19131|
|Contact: Joanne S Buzaglo, PhD 267-295-3001 firstname.lastname@example.org|
|Contact: Anne Morris, MPH 267-295-3003 email@example.com|
|Principal Investigator: Joanne S Buzaglo, PhD|
|Sub-Investigator: Mitch Golant, PhD|
|Sub-Investigator: Kasey R Dougherty, MA|
|Principal Investigator:||Joanne S Buzaglo, PhD||Cancer Support Community|