Due to advances in treatment and supportive care, a growing number of people are living longer with metastatic and advanced cancers that are unlikely to be cured. Researchers at the National Cancer Institute (NCI) estimated that as of 2018, there were 623,405 people in the United States living with the most prevalent metastatic cancers — breast, prostate, lung, colorectal, or bladder cancer or metastatic melanoma — and that number is expected to increase to 693,452 by the year 2025.
The population of metastatic and advanced cancer survivors, which varies in terms of disease characteristics, treatments received, and symptoms, likely also has different needs from the population of cancer survivors diagnosed with and treated for early-stage disease. For example, individuals living with metastatic or advanced cancer may go on and off therapy, be treated with new and novel therapies, and/or not know their likelihood of recovery or recurrence. This may have mental, emotional, and social – also known as psychosocial – effects. Many of the needs of this population of cancer survivors have not been well documented nor effectively managed.
NCI’s Division of Cancer Control and Population Sciences (DCCPS) is supporting a number of activities focused on the survivorship needs of people living with likely incurable cancer. This work is expected to identify scientific gaps, improve the understanding of experiences and unmet needs for survivors and caregivers, and promote the development and testing of interventions to improve outcomes.
Funding Opportunity
In May 2022, DCCPS announced a funding opportunity focused on survivors living with likely incurable cancer. The goal of RFA-CA-22-027 was to support grant applications that aim to 1) better understand the physical and psychological symptoms, patterns of care, and unmet needs of this group of survivors, and 2) develop and test ways to improve the delivery of comprehensive survivorship care for them.
This RFA had two receipt dates, and eight awards were funded through this funding opportunity. The funded grants are below:
| Grant Number | Project Title | Institution | Principal Investigators |
|---|---|---|---|
| R01CA281759 | Creatine supplementation and resistance training to preserve muscle mass and attenuate cancer progression: A double-blind randomized controlled trial | University of Utah | Adriana Coletta, Neeraj Agarwal |
| R01CA281861 | Randomized Phase II Trial of Prolonged Overnight Fasting and/or Exercise on Fatigue and Other Patient Reported Outcomes in Women with Hormone Receptor Positive Advanced Breast Cancer (FastER) | University of Miami | Tracy Crane, Christina Dieli-Conwright, Jennifer Ligibel |
| R01CA281752 | Population-based assessment of patient-reported outcomes in adults living with metastatic colorectal cancer | Georgetown University | Arnold Potosky |
| R01CA281862 | A Multi-Institute Survivorship Study of Patients Living with Advanced Cancer Who Have Had Durable Response to Immune Checkpoint Inhibitors | Roswell Park Comprehensive Cancer Center | Song Yao, Charles Kamen, Lori Sakoda |
| R01CA281873 | Biological and social determinants of psychosocial sequelae in advanced head and neck cancer survivors receiving immunotherapy | Emory University | Canhua Xiao, Veronika Fedirko |
| R01CA281756 | Survivorship in patients with multiple myeloma treated with Chimeric Antigen Receptor T-cell therapy (CAR T) | Moffitt Cancer Center | Laura Oswald, Doris Hansen, Lauren Peres |
| R01CA281885 | Randomized clinical trial of a telemedicine-mHealth symptom cluster intervention for advanced cancer patients: Increasing access in underserved rural communities | Ohio State University | Sharla Wells-Di Gregorio |
| R01CA281740 | Evaluation of a proactive identification and digital mental health intervention approach to address unmet psychosocial needs of individuals living with likely incurable cancer | Medical University of South Carolina | Jennifer Dahne, Evan Graboyes |
Related Workshop and Reports
In May 2021, DCCPS sponsored Virtual Meeting on Survivorship Needs for Individuals Living with Advanced and Metastatic Cancers to discuss gaps in knowledge and areas of unmet needs for these survivors. The meeting brought together experts in research and clinical care, as well as cancer survivors and advocates, to explore areas of high priority for metastatic and advanced cancer survivorship research.
The goals of this meeting:
- Define the current state of metastatic and advanced cancer survivorship research
- Identify unmet needs among this population
- Discuss research gaps and opportunities in the areas of epidemiology, healthcare delivery, behavioral sciences, and symptom management
Links to materials from the meeting:
- Metastatic Workshop Program Booklet (PDF, 2.54 MB)
- Survivor Advocate Panel video
- Executive Summary (PDF, 67.33 KB)
- Meeting Report, (PDF, 1.48 MB), published in the Journal of the National Cancer Institute
Data Resources
The May 2021 NCI meeting identified a number of research opportunities in the areas of epidemiology and surveillance, symptom management, psychosocial needs, healthcare delivery, and health behaviors to fill gaps in knowledge pertaining to cancer survivors living with advanced or metastatic cancer. Below is a list of available resources to facilitate research in these areas, organized by type. Please note that this list is not exhaustive. If you have any questions or would like to suggest additional resources, please contact Dr. Lisa Gallicchio at lisa.gallicchio@nih.gov.
|
Resource Name |
Insitution |
Website |
Description |
|---|---|---|---|
|
Surveillance, Epidemiology, and End Results (SEER) Program |
NCI |
SEER currently collects and publishes cancer incidence and survival data from population-based cancer registries covering approximately 48.0 percent of the U.S. population. The SEER research data include SEER cancer incidence, survival and population data associated by age, sex, race, year of diagnosis, and geographic areas (including SEER registry and county). SEER releases new research data every Spring based on the previous November’s submission of data. |
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SEER-Medicare |
NCI |
The SEER-Medicare data reflect the linkage of two large population-based sources of data that provide detailed information about Medicare beneficiaries with cancer. The data come from the SEER program of cancer registries that collect clinical, demographic and cause of death information for persons with cancer and the Medicare claims for covered health care services from the time of a person's Medicare eligibility until death. |
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SEER-Medicaid |
NCI |
The SEER-Medicaid data reflect the linkage of two large population-based sources of data that provide information about Medicaid beneficiaries with cancer. The data come from the SEER program, which consists of cancer registries across the nation that collect clinical, demographic and cause of death information for persons with cancer and the Centers for Medicare & Medicaid (CMS) Medicaid enrollment information from all 50 states and the District of Columbia. |
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SEER-Patterns of Care (POC) Studies |
NCI |
SEER POC studies are conducted on a routine basis by NCI under a Congressional Mandate to NCI; these studies are coordinated jointly by two NCI Divisions: the Division of Cancer Control and Population Sciences and the Division of Cancer Treatment and Diagnosis. Data collected for the POC studies can be requested on the POC website. |
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SEER-Consumer Assessment of Healthcare Providers and Systems (CAHPS) patient surveys |
NCI |
SEER-CAHPS is a resource for quality of cancer care research based on a linkage between the NCI's Surveillance, Epidemiology and End Results (SEER) cancer registry data and the Centers for Medicare & Medicaid Services' (CMS) Medicare Consumer Assessment of Healthcare Providers and Systems (CAHPS®) patient surveys. |
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SEER-Medical Health Outcomes Survey (MHOS) |
NCI |
The SEER-MHOS is a data resource for cancer health outcomes research. It is based on a linkage between the NCI's Surveillance, Epidemiology and End Results (SEER) cancer registry data and the Centers for Medicare & Medicaid Services' (CMS) Health Outcomes Survey (HOS). |
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CDC's National Program of Cancer Registries (NPCR) |
CDC |
De-identified cancer incidence data reported to CDC’s National Program of Cancer Registries (NPCR) and the National Cancer Institute’s (NCI’s) Surveillance, Epidemiology, and End Results (SEER) Program are available to researchers for free in public use databases that can be analyzed using software developed by NCI’s SEER Program. Additional data requests can be submitted at the NPCR website. |
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Resource Name |
Type of resource |
Foundation Name |
Webpage |
Description |
Contact information (to be posted) |
|---|---|---|---|---|---|
|
Susan Love Foundation [Love Research Army, Health of Women (HOW) Study] |
Registry/Study |
Susan Love Foundation |
Dr. Susan Love Foundation for Breast Cancer Research challenges the status quo to end breast cancer and improve the lives of people impacted by it now through education and advocacy. The Foundation drives collaborative, cutting-edge research with nontraditional partners, brings to light the collateral damage of treatment and seeks ways to diminish it, and interprets science to empower patients. Fast, flexible, and project-based, the Foundation actively engages the public in scientific research to ensure that it produces accurate and meaningful results. Available resources include the Love Research Army and data from the Health of Women (HOW) study. |
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Cancer Support Community Cancer Experience Registry |
Registry |
Cancer Support Community |
CSC is the largest professionally led nonprofit network of cancer support worldwide, dedicated to ensuring that all people impacted by cancer are empowered by knowledge, strengthened by action, and sustained by community. The Cancer Experience Registry, launched in 2013, is a data source for research and an opportunity for stakeholders to identify and address unanswered questions related to the cancer experience. The Registry is comprised of separate surveys for people diagnosed with cancer as well as for family and informal caregivers. Additionally, patients with select diagnoses are invited to complete additional questions unique to their cancer, including metastatic disease. Aggregate data reporting for community partners provides health care leaders at the local level with a snapshot of unmet patient and caregiver needs. |
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Metastatic Breast Cancer Project |
Registry/Study |
Count Me In Organization |
The Metastatic Breast Cancer Project is part of Count Me In, a nonprofit organization that brings together patients and researchers as partners to accelerate discoveries in cancer research. This project was designed and has been implemented collaboratively with metastatic breast cancer patients, patient advocates, cancer researchers, physicians, and clinical specialists. The focus is cutting edge genomic science; the data generated are shared through the CBIOportal. |
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Advanced Breast Cancer Global Alliance |
Research alliance |
Advanced Breast Cancer Global Alliance |
The ABC Global Alliance established in 2016 as an initiative of the European School of Oncology and now registered as a non-profit association in Portugal, is a multi-stakeholder platform for all those interested in collaborating on common projects relating to advanced breast cancer (ABC) around the world. |
N/A |
|
Resource Name |
Type of resource |
Webpage |
Description |
|---|---|---|---|
|
Flatiron Health |
Oncology EHR data aggregation |
Flatiron is a longitudinal, demographically and geographically varied database comprising EHR data from >280 community clinics and academic institutions, with data from almost 3 million patients with cancer in the USA available for analysis. |
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American Society of Clinical Oncology (ASCO) CancerLinQ |
Oncology EHR data aggregation |
CancerLinQ receives clinical data from multiple electronic health records (EHRs) and/or data warehouses and registry files from subscribing sites, converts that information into standards-compliant codified data, and then provides it back to the subscribing practice, along with quality measures and other analysis tools and visualizations to support care. CancerLinQ includes data from >1.5 million patients with a primary cancer diagnosis from 63 organizations across the United States that use nine different EHRs. |
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Cbioportal |
Genomic data resource |
The cBioPortal for Cancer Genomics is an open-access, open-source resource for interactive exploration of multidimensional cancer genomics data sets. The goal of cBioPortal is to significantly lower the barriers between complex genomic data and cancer researchers by providing rapid, intuitive, and high-quality access to molecular profiles and clinical attributes from large-scale cancer genomics projects, and therefore to empower researchers to translate these rich data sets into biologic insights and clinical applications. |
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The Oncology Research Information Exchange Network (ORIEN) |
Research network |
ORIEN is an alliance of cancer centers partnering in data exchange and collaboration through the use of a common protocol, Total Cancer Care®. Research projects utilizing the ORIEN network can be proposed through the ORIEN website. |
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American College of Surgeon's National Cancer Database (NCDB) |
Registry database |
The nationally recognized National Cancer Database (NCDB)—jointly sponsored by the American College of Surgeons and the American Cancer Society—is a clinical oncology database sourced from hospital registry data that are collected in more than 1,500 Commission on Cancer (CoC)-accredited facilities. NCDB data are used to analyze and track patients with malignant neoplastic diseases, their treatments, and outcomes. Data represent more than 72 percent of newly diagnosed cancer cases nationwide and more than 40 million historical records. |
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Palliative Care Research Cooperative Group (PCRC) |
Data repository |
THE PCRC group, established in 2010, aims to develop efficient palliative care research capacity nationally, support the conduct, analysis and dissemination of high-quality research in palliative care, as well as train and mentor clinician scientists committed to advancing palliative care research. The PCRC Data Informatics and Statistics Core (DISC) hosts a de-identified quantitative data repository (DiDR) of PCRC-supported and non-PCRC end-of-life and palliative care (EOLPC) research study data. Anyone may request the quantitative data and download related study materials for secondary analysis. |
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Cancer Information & Population Health Resource (UNC) |
Prospective data linkage between NC registry and other datasets |
The Cancer Information & Population Health Resource provides a prospective data linkage between metrics of cancer incidence, mortality, and burden in North Carolina and data sources at an individual and aggregate level that describe health care, economic, social, behavioral, and environmental patterns. |
Additional Materials
- Financial Toxicity among People with Metastatic Cancer: Findings from the Cancer Experience Registry
- Estimation of the Number of Individuals Living with Metastatic Cancer in the United States
- Portfolio Analysis - Current State of Funded National Institutes of Health Grants Focused on Individuals Living with Advanced and Metastatic Cancers
- Cancer Currents Blog – From Scan to Scan: The Challenges of Living with Metastatic Cancer
Phases of Cancer Survivorship
For information about the NCI Office of Cancer Survivorship (OCS) or news in the field, go to the OCS homepage, or find us on X at @NCICancerSurv.