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Trial record 1 of 180 for:    Cancer Experience Registry
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Cancer Experience Registry: An Online Research Study to Understand the Experiences of Cancer Patients and Caregivers (CER)

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ClinicalTrials.gov Identifier: NCT02333604
Recruitment Status : Recruiting
First Posted : January 7, 2015
Last Update Posted : February 1, 2022
Sponsor:
Information provided by (Responsible Party):
Melissa F. Miller, PhD MPH, Cancer Support Community, Research and Training Institute, Philadelphia

Brief Summary:
The Cancer Experience Registry®: An Online Research Study 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
Neoplasms Cancer Caregiver

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 https://www.cancersupportcommunity.org/sites/default/files/file/2020-07/CSC_Registry_Report_June_2020.pdf

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Study Type : Observational [Patient Registry]
Estimated Enrollment : 15000 participants
Observational Model: Case-Only
Time Perspective: Prospective
Target Follow-Up Duration: 2 Years
Official Title: Cancer Experience Registry: An Online Research Study to Understand the Experiences of Cancer Patients and Caregivers
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 ]
    Participant self-reported symptoms and functioning will be measured using the Patient-Reported Outcomes Measurement Information System-Preference Score (PROMIS-Pr). Five domains assess symptoms with higher scores corresponding to worse symptomology (Depression; Anxiety; Pain Interference; Fatigue; Sleep Disturbance) and three assess function with lower scores corresponding to worse functioning (Physical Function; Ability to Participate in Social Roles and Activities; Cognitive Function). Participants rate each item with reference to the past seven days; function scales have no timeframe specified. Scale scores are converted to standardized T scores (mean = 50, SD = 10); normative reference groups are the U.S. general population, except Sleep Disturbance, where comparisons are to a mix of the U.S. population and people with chronic illness.



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 has been a family caregiver or informal caregiver for someone diagnosed with cancer
Criteria

Inclusion criteria:

  • Have received a cancer diagnosis or have been a family caregiver or informal caregiver (i.e., a relative or friend) for someone diagnosed with cancer
  • Live in United States, a US territory, or Canada
  • Able to read and understand English

Exclusion criteria:

  • None

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
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Contact: Melissa F Miller, PhD, MPH 202-650-5373 melissa@cancersupportcommunity.org
Contact: Kimberly Papay Rogers, PhD 267-295-3011 krogers@cancersupportcommunity.org

Locations
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United States, Pennsylvania
Cancer Support Community Research & Training Institute Recruiting
Philadelphia, Pennsylvania, United States, 19106
Contact: Melissa F Miller, PhD, MPH    202-650-5373    melissa@cancersupportcommunity.org   
Contact: Heather Badt, MBA    267-295-3009    hbadt@cancersupportcommunity.org   
Sponsors and Collaborators
Cancer Support Community, Research and Training Institute, Philadelphia
Investigators
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Principal Investigator: Melissa F Miller, PhD, MPH Cancer Support Community
  Study Documents (Full-Text)

Documents provided by Melissa F. Miller, PhD MPH, Cancer Support Community, Research and Training Institute, Philadelphia:
Informed Consent Form  [PDF] October 8, 2021

Additional Information:
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Responsible Party: Melissa F. Miller, PhD MPH, Senior Research Director, Cancer Support Community, Cancer Support Community, Research and Training Institute, Philadelphia
ClinicalTrials.gov Identifier: NCT02333604    
First Posted: January 7, 2015    Key Record Dates
Last Update Posted: February 1, 2022
Last Verified: January 2022
Individual Participant Data (IPD) Sharing Statement:
Plan to Share IPD: No
Plan Description: IPD is not available at this time. Data in aggregate is shared with recruitment partners.
Keywords provided by Melissa F. Miller, PhD MPH, Cancer Support Community, Research and Training Institute, Philadelphia:
cancer
cancer survivorship
cancer experience
breast cancer
breast cancer, metastatic
liver cancer
lung cancer
ovarian cancer
prostate cancer
stomach cancer
bladder cancer
colorectal cancer
psychosocial needs
acute myelogenous leukemia
chronic lymphocytic leukemia
chronic myeloid leukemia
melanoma
multiple myeloma
myelodysplastic syndrome
patient insights