Cancer Experience Registry (CER) for Cancer Patients and Caregivers

NCT02333604 | Recruiting

• 1 other identifier: Salus IRB # 23044
• Study Type: observational
• Target: 15,000
• Locations: 1 country
• Sites: 1

Brief 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. 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.

Conditions

Neoplasms; Cancer; Caregiver

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

Outcome Measures

Primary Outcomes (1)

• 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.

  7 days

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: Yes
• Age Groups: Adult (18-64), Older Adult (65+)
• 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

You may qualify if:

• 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

You may not qualify if:

• None

Sponsors & Collaborators

• Cancer Support Community, Research and Training Institute, Philadelphia: lead

Study Sites (1)

Cancer Support Community Research & Training Institute

Washington D.C., District of Columbia, 20015, United States

RECRUITING

Related Links

• The 2020 Registry Report highlights findings from the Cancer Experience Registry data

MeSH Terms

Conditions

Neoplasms; Leukemia, Myeloid, Acute; Breast Neoplasms; Neoplasm Metastasis; Leukemia, Lymphocytic, Chronic, B-Cell; Leukemia, Myelogenous, Chronic, BCR-ABL Positive; Liver Neoplasms; Lung Neoplasms; Melanoma; Multiple Myeloma; Myelodysplastic Syndromes; Ovarian Neoplasms; Prostatic Neoplasms; Stomach Neoplasms; Urinary Bladder Neoplasms; Colorectal Neoplasms

Condition Hierarchy (Ancestors)

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

Study Officials

• Erica E. Fortune, PhD

  Cancer Support Community

  PRINCIPAL INVESTIGATOR

Central Study Contacts

Erica E. Fortune, PhD

CONTACT

202.659.9709; efortune@cancersupportcommunity.org

Kara Doughtie, PhD

CONTACT

kdoughtie@cancersupportcommunity.org

Study Design

• Study Type: observational
• Observational Model: CASE ONLY
• Time Perspective: PROSPECTIVE
• Target Duration: 2 Years
• Sponsor Type: OTHER
• Responsible Party: PRINCIPAL INVESTIGATOR
• PI Title: Vice President, Research, Cancer Support Community

Study Record Dates

• First Submitted: January 6, 2015
• First Posted: January 7, 2015
• Study Start: March 1, 2013
• Primary Completion (Estimated): January 1, 2035
• Study Completion (Estimated): December 1, 2035
• Last Updated: April 23, 2026

Record last verified: 2026-04

Data Sharing

• IPD Sharing: Will not share

Locations

US (1)