Prevention and Early Detection for Hereditary Cancer Syndromes

Overview

The Cancer Moonshot℠ Blue Ribbon Panel Report, published in October 2016, identified clinical and research opportunities to expand use of proven cancer prevention and early detection strategies to improve patient outcomes and has recommended projects related to cancer genetic testing (Recommendation G).

There are more than 50 known hereditary cancer syndromes; however, testing for these syndromes in appropriate populations remains a vastly underused cancer prevention strategy. Many individuals at risk for cancer lack access to genetic screening and preventative approaches due to cost, geographical location, or lack of understanding about these strategies. By improving the availability and uptake of testing by individuals and families at high-risk for cancer, significant improvements can be made in the prevention and early treatment of inherited cancer syndromes.

This recommendation supports research to develop, test, and implement evidence-based strategies to identify those at risk for inherited cancer syndromes and implement appropriate clinical management. Studies are needed to improve access to genetic counseling and testing, risk communication and clinical decision-making, and appropriate follow-up care for the prevention and early detection of inherited cancer syndromes.

The ultimate goal of this research is to develop effective cancer prevention and early detection approaches for individuals at high-risk for inherited cancer.

Approaches to Identify and Care for Individuals with Inherited Cancer Syndromes

Research projects focusing on approaches to identify and care for individuals with inherited cancer syndromes aim to increase the identification of cancer, improve follow-up care, and enhance the delivery of evidence-based care for individuals at high-risk for cancer. Projects that received funding from NCI are developing and testing innovative approaches for preventing and detecting cancer in individuals with inherited cancer syndromes, as well as studying the implementation of different strategies across a variety of clinical care settings and diverse populations.

Current projects were funded in response to the following Notice(s) of Funding Opportunities (NOFOs):

• RFA-CA-17-041, U01, Clinical Trial Required (expired January 10, 2018)
• RFA-CA-19-017, U01, Clinical Trial Required (expired January 10, 2019)

Communication and Decision-Making for Individuals with Inherited Cancer Syndromes

Research projects focusing on communication and decision-making for individuals with inherited cancer syndromes aim to develop, test and evaluate interventions and implementation approaches, or adapt existing approaches to improve patient/provider/family risk communication and clinical risk management decision making. Projects may include a variety of clinical care settings, genetic counseling and testing methods, and ethnically, socioeconomically, and geographically diverse populations. The goal of these studies is to improve understanding and communication of genetic risk and clinical management decision making for individuals who have a genetic susceptibility to cancer.

Current projects were funded in response to the following NOFOs:

• RFA-CA-19-001, U01, Clinical Trial Optional (expired January 10, 2019)
• RFA-CA-20-006, U01, Clinical Trial Optional (expired January 22, 2020) 

Funded Projects

Active Funding Announcements

There are currently no Cancer Moonshot NOFOs accepting applications for research related to prevention and early detection for hereditary cancer syndromes; however, investigators with relevant research ideas may wish to submit applications in response to the following NOFOs.

• Dissemination and Implementation Research in Health
  • PAR-19-274, R01, Clinical Trial Optional (expires May 8, 2022)
  • PAR-19-275, R21, Clinical Trial Optional (expires May 8, 2022
• Cancer Prevention and Control Clinical Trials Grant Program
  • PAR-21-035, R01, Clinical Trial Required (expires January 8, 2024)
• NIH Research Project Grant (Parent R01)
  • PA-20-185, R01, Clinical Trial Not Allowed (expires May 8, 2023)
• Ethical, Legal and Social Implications (ELSI) of Genomics Research Grant Program
  • PAR-20-255, R21, Clinical Trial Not Optional (Expires July 20, 2023)
  • PAR-20-254, R01, Clinical Trial Not Optional (Expires July 20, 2023)
  • PAR-20-257, R03, Clinical Trial Optional (Expires July 20, 2023)

Related NCI Events

• Uncovering That Which Is Hidden: Measuring the Effects of Racism in Research on Inherited Cancer Syndromes (September 2021)
• Strategies to Identify Care for Individuals with Inherited Cancer Syndromes (July 30, 2020)
• Standards-Based Informatics to Identify & Manage Eligibility for Genetic Evaluation of Cancer Risk (February 13, 2020)
• Approaches to Blue Ribbon Panel Recommendations: The Case of Lynch Syndrome (February 22-23, 2017)

Related Resources

• NCI
  • Cancer Genetics Overview (PDQ®) – Health Professional Version
  • Cancer Genetics Risk Assessment and Counseling (PDQ®) – Health Professional Version
  • Genetic Testing for Inherited Cancer Susceptibility Syndromes
• National Academies of Sciences, Engineering and Medicine
  • Genomics and Population Health Collaborative

Contacts

• Nonniekaye Shelburne, C.R.N.P., M.S., A.O.C.N., Program Director, Clinical and Translational Epidemiology Branch, Epidemiology and Genomics Research Program
• Wendy Nelson, Ph.D., M.P.H., Program Director, Basic Biobehavioral and Psychological Sciences Branch, Behavioral Research Program