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Cancer Experience Registry: An Online Initiative to Understand the Experiences of Those Impacted by a Cancer Diagnosis (CER)

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ClinicalTrials.gov Identifier: NCT02333604
Recruitment Status : Recruiting
First Posted : January 7, 2015
Last Update Posted : October 2, 2018
Sponsor:
Information provided by (Responsible Party):
Julie Olson, PhD, Cancer Support Community, Research and Training Institute, Philadelphia

Brief Summary:
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.

Condition or disease
Cancers

Detailed 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 www.CancerSupportCommunity.org/RegistryIndexReport2017


Study Type : Observational [Patient Registry]
Estimated Enrollment : 15000 participants
Observational Model: Case-Only
Time Perspective: Cross-Sectional
Target Follow-Up Duration: 10 Years
Official Title: Cancer Experience Registry: An Online Initiative to Understand the Experiences of Those Impacted by a Cancer Diagnosis
Actual Study Start Date : March 2013
Estimated Primary Completion Date : January 2035
Estimated Study Completion Date : December 2035





Primary Outcome Measures :
  1. Self-reported quality of life measures [ Time Frame: 7 days ]


Information from the National Library of Medicine

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Ages Eligible for Study:   18 Years and older   (Adult, Older Adult)
Sexes Eligible for Study:   All
Accepts Healthy Volunteers:   Yes
Sampling Method:   Non-Probability Sample
Study Population
Any individual who has received a cancer diagnosis or is caring for someone with cancer.
Criteria

Inclusion Criteria:

  • Having received a cancer diagnosis or caring for someone with cancer

Exclusion Criteria:


Information from the National Library of Medicine

To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.

Please refer to this study by its ClinicalTrials.gov identifier (NCT number): NCT02333604


Contacts
Contact: Julie Olson, PhD 2672953003 jolson@cancersupportcommunity.org
Contact: Alexandra Zaleta, PhD 2672953004 azaleta@cancersupportcommunity.org

Locations
United States, Pennsylvania
Cancer Support Community Research & Training Institute Recruiting
Philadelphia, Pennsylvania, United States, 19131
Contact: Julie Olson, PhD    267-295-3003    jolson@cancersuportcommunity.org   
Contact: Alexandra Zaleta, PhD    267-295-3004    azaleta@cancersupportcommunity.org   
Sponsors and Collaborators
Cancer Support Community, Research and Training Institute, Philadelphia
Investigators
Principal Investigator: Julie Olson, PhD Cancer Support Community

Additional Information:
Responsible Party: Julie Olson, PhD, Director, Research, Cancer Support Community, Research and Training Institute, Philadelphia
ClinicalTrials.gov Identifier: NCT02333604     History of Changes
First Posted: January 7, 2015    Key Record Dates
Last Update Posted: October 2, 2018
Last Verified: October 2018

Keywords provided by Julie Olson, PhD, 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
Prostate
Colon
Kidney
Lung
Melanoma
Caregiver
gastric cancer
stomach cancer
chronic lymphocytic leukemia