NeoplasmsCERNCT02333604
Cancer Experience Registry (CER) for Cancer Patients and Caregivers
An observational study of Neoplasms and Cancer, run by Cancer Support Community, Research and Training Institute, Philadelphia at 1 site in United States.
Trial summary
The Cancer Experience Registry®: An Online Survey 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. Read more about this study
- Who is it for?
- Ages 18 years and olderHealthy volunteers can take part
- How many people
- 15,000 participants
- Where
- 1 siteUnited States
- Study dates
- Mar 2013to Dec 2035
- How long will I take part?
- 2 Years
- Phase
- Observational
- Are there results?
- Not yet: the study is under way
Key requirements
Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.
- Ages 18 years and older
- All sexes
- Healthy volunteers accepted
- Adult, Older adult
Study population: Any individual who has received a cancer diagnosis or has been a family caregiver or informal caregiver for someone diagnosed with cancer
Who may be able to join
- 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
Who cannot join
- None
Trial locations and contacts
1 site in 1 country. Contact the study team or a site near you to ask about taking part.
United States1 site, 1 recruiting
- Recruiting
Cancer Support Community Research & Training Institute
Washington D.C., District of Columbia, 20015
Erica E Fortune, PhD, 202.659.9709, efortune@cancersupportcommunity.org
Claire Saxton, MBA, 202.659.9709, csaxton@cancersupportcommunity.org
About this study
Official title: Cancer Experience Registry: An Online Survey Research Study to Understand the Experiences of Cancer Patients and Caregivers
The Cancer Experience Registry®: An Online Survey 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.
Read the 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
- Keywords
- cancer, cancer survivorship, psychosocial needs, cancer experience, acute myelogenous leukemia, breast cancer, breast cancer, metastatic, chronic lymphocytic leukemia, chronic myeloid leukemia, liver cancer, lung cancer, melanoma, multiple myeloma, myelodysplastic syndrome, ovarian cancer, prostate cancer, stomach cancer, bladder cancer, colorectal cancer, patient insights
- Medical subject headings
- Neoplasms, Leukemia, Myeloid, Acute, Breast Neoplasms, Neoplasm Metastasis, Leukemia, Lymphocytic, Chronic, B-Cell, Leukemia, Myelogenous, Chronic, BCR-ABL Positive, Liver Neoplasms, Lung Neoplasms
What is being measured
The primary outcome is the main question the study is designed to answer.
Self-reported quality of life measures
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.
Measured: 7 days
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted7 Jan 2015 (estimated)
- Study startMar 2013
- Primary completionJan 2035 (estimated)
- Study completionDec 2035 (estimated)
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Other trials for NeoplasmsStudies of the same condition, open and under way.
- What the trial phases meanHow a treatment moves from first tests in people to approval.
More details
For doctors and researchers: how the study is designed, who runs it, and its registry IDs.
Study design
- Study type
- Observational
- Observational model
- Case only
- Time perspective
- Prospective
- Enrolment
- 15,000 participants (estimated)
- Target duration
- 2 Years
Sponsor and investigators
- Lead sponsor
- Cancer Support Community, Research and Training Institute, Philadelphia
- Sponsor type
- University, hospital or other
- Responsible party
- Principal investigator, Erica E. Fortune, Cancer Support Community, Research and Training Institute, Philadelphia
- Investigators
- Erica E. Fortune, PhD, Principal investigator, Cancer Support Community
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT02333604
- Sponsor's protocol ID
- Salus IRB # 23044
- Acronym
- CER
- Status last verified
- Apr 2026
- First submitted
- 6 Jan 2015
- Last updated
- 29 Oct 2026
- Results posted
- No
- Data monitoring committee
- No
- Individual data sharing
- No: IPD is not available at this time. Data in aggregate is shared with recruitment partners.
Study at a glance
From the registry record, last updated by the sponsor on 29 Oct 2026. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- Cancer Experience Registry: An Online Survey Research Study to Understand the Experiences of Cancer Patients and Caregivers
- ClinicalTrials.gov ID
- NCT02333604
- Acronym / sponsor ID
- CER / Salus IRB # 23044
- Keywords
- cancer, cancer survivorship, psychosocial needs, cancer experience, acute myelogenous leukemia, breast cancer, breast cancer, metastatic, chronic lymphocytic leukemia
- Study type
- Observational
- Recruitment status
- Recruiting
- Enrolment
- 15,000 participants (estimated)
- Lead sponsor
- Cancer Support Community, Research and Training Institute, PhiladelphiaUniversity, hospital or other
- Study start
- Mar 2013 (actual)
- Primary completion
- Jan 2035 (estimated)
- Study completion
- Dec 2035 (estimated)
- First posted
- 7 Jan 2015 (estimated)
- Results
- Not posted in the source record
Clinical summary
The research question as the sponsor registered it. This describes what the study plans to test, not what it found.
The Cancer Experience Registry®: An Online Survey 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.
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
Study design
- Observational model
- Case only
- Time perspective
- Prospective
- Target follow-up
- 2 Years
Who may qualify
- Ages
- 18 years and older
- Sex
- All
- Healthy volunteers
- Accepted
- Age groups
- Adult, Older adult
- Study population
- Any individual who has received a cancer diagnosis or has been a family caregiver or informal caregiver for someone diagnosed with cancer
Key inclusion criteria (3 listed)
- 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
Key exclusion criteria (1 listed)
- None
Eligibility is decided by the study team after screening; this overview does not establish that a patient qualifies. Full inclusion and exclusion criteria.
Primary outcome
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.
Results and safety
This study is still under way. Results are not available in the source record yet.
Research links
- Official record on ClinicalTrials.govLast updated by the sponsor 29 Oct 2026.
- The 2020 Registry Report highlights findings from the Cancer Experience Registry dataLink provided by the sponsor.
- Individual participant dataSharing planned: No. IPD is not available at this time. Data in aggregate is shared with recruitment partners.
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Referral and contact
AzTrials does not enrol participants or take referrals. Contact the study team or a site listed below; they decide who can take part.
Erica E. Fortune, PhD principal investigator
Cancer Support Community
1 site in 1 country: see every site and its status.
Questions about this trial
What is this clinical trial studying?
An observational study of Neoplasms and Cancer, run by Cancer Support Community, Research and Training Institute, Philadelphia at 1 site in United States.
The full registered description is in the About this study section and the official record.
Who may be eligible to take part?
The sponsor lists 3 inclusion and 1 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.
Is this clinical trial currently recruiting?
The record says: looking for participants now, as of the sponsor's last update on 29 Oct 2026. Status can change between updates, so confirm with the study contact before making plans.
Where is the study taking place?
The record lists 1 site in United States. Whether a site is taking part right now should be confirmed with that site. See every site.
What are the possible benefits and risks?
They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.
Are results available for this study?
This study is still under way. Results are not available in the source record yet.
How can a doctor refer a patient or contact the research team?
Contact Olajide Fadare, PhD (202.659.9709 ext. 10105, ofadare@cancersupportcommunity.org), or a site near the patient. AzTrials does not enrol participants or take referrals.
What does the primary outcome measure?
Self-reported quality of life measures (time frame: 7 days). It is what the study was designed to measure, not a finding.
Where can I read the original study information?
Does a listing mean the treatment is approved or proven to work?
No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.
How often is this information updated?
AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 29 Oct 2026.