Cancer Experience Registry: An Online Initiative to Change the Future of Cancer Care

This study is currently recruiting participants. (see Contacts and Locations)
Verified July 2013 by Cancer Support Community, Research and Training Institute, Philadelphia
Sponsor:
Information provided by (Responsible Party):
Cancer Support Community, Research and Training Institute, Philadelphia
ClinicalTrials.gov Identifier:
NCT01295658
First received: February 11, 2011
Last updated: July 18, 2013
Last verified: July 2013
  Purpose

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


Condition
Cancers

Study Type: Observational
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

Resource links provided by NLM:


Further study details as provided by Cancer Support Community, Research and Training Institute, Philadelphia:

Primary Outcome Measures:
  • Self-reported quality of life measures [ Time Frame: 4 weeks ] [ Designated as safety issue: No ]

Estimated Enrollment: 10000
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)
Groups/Cohorts
Cancer Survivors

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.


Detailed Description:

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.

  Eligibility

Ages Eligible for Study:   18 Years and older
Genders Eligible for Study:   Both
Accepts Healthy Volunteers:   Yes
Sampling Method:   Non-Probability Sample
Study Population

Any individual who has received a cancer diagnosis.

Criteria

Inclusion Criteria:

  • Having received a cancer diagnosis

Exclusion Criteria:

  • None
  Contacts and Locations
Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the Contacts provided below. For general information, see Learn About Clinical Studies.

Please refer to this study by its ClinicalTrials.gov identifier: NCT01295658

Contacts
Contact: Anne Morris, MPH 267-295-3003 anne@cancersupportcommunity.org
Contact: Joanne S Buzaglo, PhD 267-295-3001 joanne@cancersupportcommunity.org

Locations
United States, Pennsylvania
Cancer Support Community Research & Training Institute Recruiting
Philadelphia, Pennsylvania, United States, 19131
Contact: Joanne S Buzaglo, PhD    267-295-3001    joanne@cancersuportcommunity.org   
Contact: Anne Morris, MPH    267-295-3003    anne@cancersupportcommunity.org   
Principal Investigator: Joanne S Buzaglo, PhD         
Sub-Investigator: Mitch Golant, PhD         
Sub-Investigator: Kasey R Dougherty, MA         
Sponsors and Collaborators
Cancer Support Community, Research and Training Institute, Philadelphia
Investigators
Principal Investigator: Joanne S Buzaglo, PhD Cancer Support Community
  More Information

Additional Information:
No publications provided

Responsible Party: Cancer Support Community, Research and Training Institute, Philadelphia
ClinicalTrials.gov Identifier: NCT01295658     History of Changes
Other Study ID Numbers: CSC-MAP-0102
Study First Received: February 11, 2011
Last Updated: July 18, 2013
Health Authority: United States: Institutional Review Board

Keywords provided by Cancer Support Community, Research and Training Institute, Philadelphia:
cancer
cancer survivorship
psychosocial needs
cancer experience
metastatic breast cancer
multiple myeloma
chronic myeloid leukemia
breast cancer

ClinicalTrials.gov processed this record on July 26, 2014