Communication and Decision Making for Individuals with Inherited Cancer Syndromes

Hereditary cancers account for 5%-10% of all cancers, resulting in a considerable population burden of morbidity and mortality. Individuals with an inherited susceptibility to cancer require special and long-term care, and clinical management necessitates interdisciplinary cooperation among multiple providers, including genetic counselors, oncologists, primary care physicians, and surgeons. One of the most challenging tasks facing these individuals is understanding their risk of disease and applying this understanding to decisions involving risk management and disclosure of genetic information to family members.

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 reduce cancer risk and cancer health disparities. The objective of the communication and decision making for individuals with an inherited susceptibility to cancer initiative was to improve the current state of early detection, genetic counseling, and genetic testing by supporting research to develop, test, and evaluate interventions and implementation approaches to improve cancer risk communication between individuals with an inherited susceptibility to cancer (and their families) and providers so that affected individuals could make informed clinical risk management decisions. Projects were encouraged to include a variety of clinical care settings, genetic counseling and testing methods, and ethnically, socioeconomically, and geographically diverse populations.

Current grants were funded in response to the following FOAs:

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

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

Active Grants

PI Name

Organization Name

Project Title

Project Number

Angela R. Bradbury, M.D.

University of Pennsylvania

A Randomized Hybrid Type I Effectiveness-Implementation Study of an Ehealth Delivery Alternative for Cancer Genetic Testing for Hereditary Cancer Predisposition (EREACH)

1U01CA243702-01A1

 

Daniel C. Chung, M.D.

Massachusetts General Hospital

Development and Implementation of Electronic Decision AIDS for Genetic Testing in Inherited Cancer Syndromes

1U01CA243695-01A1

Jada G. Hamilton, Ph.D., M.P.H.

Sloan-Kettering Inst Can Research

Prospective Trial of a Linguistically and Culturally Appropriate Mainstreaming Model for Hereditary Cancer Multigene Panel Testing Among Diverse Cancer Patients

1U01CA243644-01A1

Steven J. Katz, M.D., M.P.H.

University of Michigan At Ann Arbor

A Population-Based Virtual Solution to Reduce Gaps in Genetic Risk Evaluation and Management in Families at High Risk for Hereditary Cancer Syndromes: the Georgia-California Genelink Trial

1U01CA254822-01

Jennifer W. Mack, M.D., M.P.H.

Featured Grantee profile

Dana-Farber Cancer Inst

The AYA-RISE Intervention: Risk Information and Screening Education for Adolescents and Young Adults with Cancer Predisposition Syndromes

1U01CA243688-01

Tuya Pal, M.D.

Vanderbilt University Medical Center

Improving Care After Inherited Cancer Testing (IMPACT) Study

1U01CA254832-01

 

Funding Opportunities

Although there are currently no Cancer Moonshot funding opportunity announcements (FOAs) accepting applications specifically related to communication and decision making for individuals with an inherited susceptibility to cancer, investigators with related research ideas may consider submitting applications to:

Title

Announcement #

Expiration Date

Contact

Stimulating Innovations in Behavioral Intervention Research for Cancer Prevention and Control (R21)

 

PAR-13-309 (R21 Clinical Trial Optional)

 

September 08, 2022

Tanya Agurs-Collins

collinsta@mail.nih.gov

 

 

NOSI: Development and Preliminary Testing of Health-related Behavioral Interventions

NOT-OD-20-106 (Notice of Special Interest)

 

September 26, 2022

Susan Czajkowski

czajkows@mail.nih.gov

 

 

NCI Small Grants Program for Cancer Research for Years 2020, 2021, and 2020 (R03)

PAR-20-052 (NCI Omnibus R03 Clinical Trial Optional)

January 08, 2023

Paige Green

paige.green@nih.gov

 

NIH Research Project Grant (R01)

PA-20-185 (Parent R01 Clinical Trial Not Allowed)

May 08, 2023

Paige Green

paige.green@nih.gov

 

Cancer Prevention and Control Clinical Trials Grant Program (R01)

PAR-21-035 (R01 Clinical Trial Required)

 

January 08, 2024

Susan Czajkowski

czajkows@mail.nih.gov

 

Modular R01s in Cancer Control and Population Sciences (R01 Clinical Trial Optional)

PAR-21-190 (R01 Clinical Trial Optional)

 

March 08, 2024

Scott Rogers

rogerssc@mail.nih.gov

 

 

Areas of Continued Interest/Emphasis for New Applications

  • Communication strategies for return of an uninformative test result or variant of uncertain significance (VUS)
  • Behavioral and psychological outcomes of receiving an uninformative test result or VUS result
  • Technological, verbal, and written communication approaches to genetic counseling and testing that promote understanding of genetic risk and help guide clinical management decisions
  • Decision-making tools and approaches to promote understanding of disease risk and help guide clinical management decisions
  • Delivery of culturally competent genetic counseling that addresses the needs of medically underserved individuals
Last Updated
June 24, 2021