Neoplasms

Skin and Connective Tissue Diseases

All Conditions

Symptoms and General Pathology

Digestive System Diseases

Urinary Tract, Sexual Organs, and Pregnancy Conditions

Respiratory Tract (Lung and Bronchial) Diseases

Gland and Hormone Related Diseases

Heart and Blood Diseases

Blood and Lymph Conditions

Immune System Diseases

Rare Diseases

Breast Neoplasms

Syndrome

Stomach Neoplasms

Prostatic Neoplasms

Lung Neoplasms

Ovarian Neoplasms

Carcinoma, Ovarian Epithelial

Multiple Myeloma

Neoplasms, Plasma Cell

Leukemia

Leukemia, Lymphoid

Urinary Bladder Neoplasms

Melanoma

Liver Neoplasms

Leukemia, Myeloid

Leukemia, Myeloid, Acute

Leukemia, Lymphocytic, Chronic, B-Cell

Leukemia, Myelogenous, Chronic, BCR-ABL Positive

Preleukemia

Myelodysplastic Syndromes

Chronic Graft Versus Host Disease

Stomach Cancer

Ovarian Cancer

Ovarian Epithelial Cancer

Myeloid Leukemia

Acute Myeloid Leukemia

Acute Non Lymphoblastic Leukemia

Chronic Lymphocytic Leukemia

Chronic Myeloid Leukemia

Acute Graft Versus Host Disease

Hematinics

All Drugs and Chemicals

Liver Extracts

Erica E. Fortune, PhD

Kara Doughtie, PhD

Erica E Fortune, PhD

Claire Saxton, MBA

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

Cancer Experience Registry (CER) for Cancer Patients and Caregivers

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

IPD is not available at this time. Data in aggregate is shared with recruitment partners.

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.

Cancer Support Community, Research and Training Institute, Philadelphia

Vice President, Research, Cancer Support Community

Breast Diseases

Skin Diseases

This is a broad observational study conducted online at www.cancerexperienceregistry.org, or via pen and paper survey obtained by calling the cancer support helpline at 888-793-9355

Any individual who has ever received a cancer diagnosis, regardless of disease type, stage, treatment, and time since diagnosis, can take part in this study.

Linda House, RN, BSN, MSM

Cancer Survivor Registry: The Breast Cancer M.A. P. (Mind Affects the Physical M.A.P.) Project to identify and help us understand the emotional and social needs of breast cancer survivors.

The Cancer Survivor Registry: The Breast Cancer M.A.P. (Mind Affects the Physical) Project was the first registry of its kind to look at the emotional and social needs of individuals diagnosed with breast cancer and track how their needs changed throughout their cancer journey. Data will raise awareness and help develop programs to address the needs of breast cancer survivors. Findings from the Registry are disseminated online at www.CancerSupportCommunity.org/RegistryIndexReport2017

Cancer Survivor Registry: The Breast Cancer M.A.P. (Mind Affects the Physical) Project

Director of Research, Cancer Support Community

Study title	NCT ID	Conditions	Eligibility	Organization
Cancer Experience Registry (CER) for Cancer Patients and Caregivers	NCT02333604	Neoplasms Cancer Caregiver	18 Years -	Cancer Support Community, Research and Training Institute, Philadelphia
Cancer Experience Registry (CER) for Cancer Patients and Caregivers	NCT02333604	Neoplasms Cancer Caregiver	18 Years -	Cancer Support Community, Research and Training Institute, Philadelphia
Cancer Survivor Registry: The Breast Cancer M.A.P. (Mind Affects the Physical) Project	NCT01295658	Cancers	18 Years -	Cancer Support Community, Research and Training Institute, Philadelphia
Cancer Experience Registry (CER) for Cancer Patients and Caregivers	NCT02333604	Neoplasms Cancer Caregiver	18 Years -	Cancer Support Community, Research and Training Institute, Philadelphia
Cancer Survivor Registry: The Breast Cancer M.A.P. (Mind Affects the Physical) Project	NCT01295658	Cancers	18 Years -	Cancer Support Community, Research and Training Institute, Philadelphia
Cancer Experience Registry (CER) for Cancer Patients and Caregivers	NCT02333604	Neoplasms Cancer Caregiver	18 Years -	Cancer Support Community, Research and Training Institute, Philadelphia

Spots Global Cancer Trial Database for psychosocial needs