Cancer Experience Registry (CER) for Cancer Patients and Caregivers (CER)
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The safety and scientific validity of this study is the responsibility of the study sponsor and investigators. Listing a study does not mean it has been evaluated by the U.S. Federal Government. Know the risks and potential benefits of clinical studies and talk to your health care provider before participating. Read our disclaimer for details. |
| ClinicalTrials.gov Identifier: NCT02333604 |
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Recruitment Status :
Recruiting
First Posted : January 7, 2015
Last Update Posted : April 15, 2024
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| Condition or disease |
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| Neoplasms Cancer Caregiver |
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
| 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 Survey 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 |
- 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.
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, Learn About Clinical Studies.
| 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 |
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
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
| Contact: Erica E. Fortune, PhD | 202.659.9709 | efortune@cancersupportcommunity.org | |
| Contact: Kara Doughtie, PhD | kdoughtie@cancersupportcommunity.org |
| United States, District of Columbia | |
| Cancer Support Community Research & Training Institute | Recruiting |
| Washington, District of Columbia, United States, 20015 | |
| Contact: Erica E Fortune, PhD 202-659-9709 efortune@cancersupportcommunity.org | |
| Contact: Claire Saxton, MBA 202.659.9709 csaxton@cancersupportcommunity.org | |
| Principal Investigator: | Erica E. Fortune, PhD | Cancer Support Community |
Documents provided by Erica E. Fortune, Cancer Support Community, Research and Training Institute, Philadelphia:
| Responsible Party: | Erica E. Fortune, Vice President, Research, Cancer Support Community, Cancer Support Community, Research and Training Institute, Philadelphia |
| ClinicalTrials.gov Identifier: | NCT02333604 |
| Other Study ID Numbers: |
Salus IRB # 23044 |
| First Posted: | January 7, 2015 Key Record Dates |
| Last Update Posted: | April 15, 2024 |
| Last Verified: | April 2024 |
| 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. |
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