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NCT Number: NCT02333604

Cancer Experience Registry (CER) for 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.

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Key information

Conditions

Neoplasms Adnexal Diseases Blood Protein Disorders Bone Marrow Diseases Breast Diseases Breast Neoplasms Cancer Cardiovascular Diseases Caregiver Chronic Disease Colonic Diseases Colorectal Neoplasms Digestive System Diseases Digestive System Neoplasms Disease Attributes Endocrine Gland Neoplasms Endocrine System Diseases Female Urogenital Diseases Female Urogenital Diseases and Pregnancy Complications Gastrointestinal Diseases Gastrointestinal Neoplasms Genital Diseases Genital Diseases, Female Genital Diseases, Male Genital Neoplasms, Female Genital Neoplasms, Male Gonadal Disorders Hematologic Diseases Hemic and Lymphatic Diseases Hemorrhagic Disorders Hemostatic Disorders Immune System Diseases Immunoproliferative Disorders Intestinal Diseases Intestinal Neoplasms Leukemia Leukemia, B-Cell Leukemia, Lymphocytic, Chronic, B-Cell Leukemia, Lymphoid Leukemia, Myelogenous, Chronic, BCR-ABL Positive Leukemia, Myeloid Leukemia, Myeloid, Acute Liver Diseases Liver Neoplasms Lung Diseases Lung Neoplasms Lymphatic Diseases Lymphoproliferative Disorders Male Urogenital Diseases Melanoma Multiple Myeloma Myelodysplastic Syndromes Myeloproliferative Disorders Neoplasm Metastasis Neoplasms by Histologic Type Neoplasms by Site Neoplasms, Germ Cell and Embryonal Neoplasms, Nerve Tissue Neoplasms, Plasma Cell Neoplastic Processes Neuroectodermal Tumors Neuroendocrine Tumors Nevi and Melanomas Ovarian Diseases Ovarian Neoplasms Paraproteinemias Pathologic Processes Pathological Conditions, Signs and Symptoms Prostatic Diseases Prostatic Neoplasms Rectal Diseases Respiratory Tract Diseases Respiratory Tract Neoplasms Skin Diseases Skin Neoplasms Skin and Connective Tissue Diseases Stomach Diseases Stomach Neoplasms Thoracic Neoplasms Urinary Bladder Diseases Urinary Bladder Neoplasms Urogenital Diseases Urogenital Neoplasms Urologic Diseases Urologic Neoplasms Vascular Diseases

Age range

18 year and older

Sex eligibility

All sexes

Study type

Observational

Primary location

About this study

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

Who can participate

Healthy volunteers accepted: Yes

Only the study team can determine whether someone qualifies for participation.

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

Treatment and study plan

Primary outcomes

  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.

Study contacts

Contact information is provided by the study sponsor or research team.

Erica E. Fortune, PhD

CONTACT

[email protected]

202.659.9709

Kara Doughtie, PhD

CONTACT

[email protected]

Sponsors and collaborators

Lead sponsor

Cancer Support Community, Research and Training Institute, Philadelphia

Other

Registry information

Official study title

Cancer Experience Registry: An Online Survey Research Study to Understand the Experiences of Cancer Patients and Caregivers

Acronym: CER

Important dates

Study start
2013
Primary completion
2035
Study completion
2035
First posted
Jan 7, 2015
Registry last updated
Apr 23, 2026

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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