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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.
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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| Measure | Description | Time Frame |
|---|---|---|
| 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 |
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Inclusion criteria:
Exclusion criteria:
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Any individual who has received a cancer diagnosis or has been a family caregiver or informal caregiver for someone diagnosed with cancer
| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Erica E. Fortune, PhD | Contact | 202.659.9709 | efortune@cancersupportcommunity.org | |
| Kara Doughtie, PhD | Contact | kdoughtie@cancersupportcommunity.org |
| Name | Affiliation | Role |
|---|---|---|
| Erica E. Fortune, PhD | Cancer Support Community | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Cancer Support Community Research & Training Institute | Recruiting | Washington D.C. | District of Columbia | 20015 | United States |
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| Label | URL |
|---|---|
| The 2020 Registry Report highlights findings from the Cancer Experience Registry data | View source |
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IPD is not available at this time. Data in aggregate is shared with recruitment partners.
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| Type | Includes Protocol | Includes SAP | Includes ICF | Document Label | Document Date | Document Uploaded Date | Document File Name |
|---|---|---|---|---|---|---|---|
| Prot | Yes | No | No | Study Protocol: Study Protocol upload 03.26.2026 | Feb 20, 2026 | Mar 16, 2026 | Prot_005.pdf |
| Prot | Yes | No | No | Study Protocol: Study Protocol upload 4.13.26 | Nov 5, 2024 | Apr 13, 2026 | Prot_006.pdf |
| Prot_SAP | Yes | Yes | No | Study Protocol and Statistical Analysis Plan: Study Protocol upload 04.02.2026 | Nov 5, 2024 | Apr 2, 2026 | Prot_SAP_007.pdf |
| SAP | No | Yes | No | Statistical Analysis Plan: Statistical Analysis Plan upload 4.20.26 | Nov 5, 2024 | Apr 20, 2026 | SAP_008.pdf |
| SAP | No | Yes | No | Statistical Analysis Plan: Statistical Analysis Plan upload 4.15.26 | Apr 15, 2024 | Apr 15, 2026 | SAP_009.pdf |
| SAP | No | Yes | No | Statistical Analysis Plan: Statistical Analysis Plan upload 4.13.26 | Nov 5, 2024 | Apr 13, 2026 | SAP_010.pdf |
| ICF | No | No | Yes | Informed Consent Form: ICF_Upload04.02.2026 | Apr 12, 2024 | Apr 2, 2026 | ICF_011.pdf |
| ICF | No | No | Yes | Informed Consent Form: ICF_Upload04.12.2024 | Apr 12, 2024 | Apr 12, 2024 | ICF_004.pdf |
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| ID | Term |
|---|---|
| D009369 | Neoplasms |
| D015470 | Leukemia, Myeloid, Acute |
| D001943 | Breast Neoplasms |
| D009362 | Neoplasm Metastasis |
| D015451 | Leukemia, Lymphocytic, Chronic, B-Cell |
| D015464 | Leukemia, Myelogenous, Chronic, BCR-ABL Positive |
| D008113 | Liver Neoplasms |
| D008175 | Lung Neoplasms |
| D008545 | Melanoma |
| D009101 | Multiple Myeloma |
| D009190 | Myelodysplastic Syndromes |
| D010051 | Ovarian Neoplasms |
| D011471 | Prostatic Neoplasms |
| D013274 | Stomach Neoplasms |
| D001749 | Urinary Bladder Neoplasms |
| D015179 | Colorectal Neoplasms |
| ID | Term |
|---|---|
| D007951 | Leukemia, Myeloid |
| D007938 | Leukemia |
| D009370 | Neoplasms by Histologic Type |
| D006402 | Hematologic Diseases |
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| D006425 |
| Hemic and Lymphatic Diseases |
| D009371 | Neoplasms by Site |
| D001941 | Breast Diseases |
| D012871 | Skin Diseases |
| D017437 | Skin and Connective Tissue Diseases |
| D009385 | Neoplastic Processes |
| D010335 | Pathologic Processes |
| D013568 | Pathological Conditions, Signs and Symptoms |
| D015448 | Leukemia, B-Cell |
| D007945 | Leukemia, Lymphoid |
| D008232 | Lymphoproliferative Disorders |
| D008206 | Lymphatic Diseases |
| D007160 | Immunoproliferative Disorders |
| D007154 | Immune System Diseases |
| D002908 | Chronic Disease |
| D020969 | Disease Attributes |
| D009196 | Myeloproliferative Disorders |
| D001855 | Bone Marrow Diseases |
| D004067 | Digestive System Neoplasms |
| D004066 | Digestive System Diseases |
| D008107 | Liver Diseases |
| D012142 | Respiratory Tract Neoplasms |
| D013899 | Thoracic Neoplasms |
| D008171 | Lung Diseases |
| D012140 | Respiratory Tract Diseases |
| D018358 | Neuroendocrine Tumors |
| D017599 | Neuroectodermal Tumors |
| D009373 | Neoplasms, Germ Cell and Embryonal |
| D009380 | Neoplasms, Nerve Tissue |
| D018326 | Nevi and Melanomas |
| D012878 | Skin Neoplasms |
| D054219 | Neoplasms, Plasma Cell |
| D020141 | Hemostatic Disorders |
| D014652 | Vascular Diseases |
| D002318 | Cardiovascular Diseases |
| D010265 | Paraproteinemias |
| D001796 | Blood Protein Disorders |
| D006474 | Hemorrhagic Disorders |
| D004701 | Endocrine Gland Neoplasms |
| D010049 | Ovarian Diseases |
| D000291 | Adnexal Diseases |
| D005831 | Genital Diseases, Female |
| D052776 | Female Urogenital Diseases |
| D005261 | Female Urogenital Diseases and Pregnancy Complications |
| D000091642 | Urogenital Diseases |
| D005833 | Genital Neoplasms, Female |
| D014565 | Urogenital Neoplasms |
| D000091662 | Genital Diseases |
| D004700 | Endocrine System Diseases |
| D006058 | Gonadal Disorders |
| D005834 | Genital Neoplasms, Male |
| D005832 | Genital Diseases, Male |
| D011469 | Prostatic Diseases |
| D052801 | Male Urogenital Diseases |
| D005770 | Gastrointestinal Neoplasms |
| D005767 | Gastrointestinal Diseases |
| D013272 | Stomach Diseases |
| D014571 | Urologic Neoplasms |
| D001745 | Urinary Bladder Diseases |
| D014570 | Urologic Diseases |
| D007414 | Intestinal Neoplasms |
| D003108 | Colonic Diseases |
| D007410 | Intestinal Diseases |
| D012002 | Rectal Diseases |