Principal Investigator

Adam H
Buchanan
Awardee Organization

Geisinger Clinic
United States

Fiscal Year
2023
Activity Code
U01
Early Stage Investigator Grants (ESI)
Not Applicable
Project End Date

Feasibility and Assessment of a Cascade Traceback Screening program - FACTS

Ovarian cancer is the deadliest gynecologic cancer, and the fifth leading cause of cancer death in US women. Despite guidelines recommending genetic testing for all women with ovarian cancer, fewer than one-quarter are tested. This project will focus on the feasibility and options for implementation of a Traceback cascade screening program through methods, culturallyappropriate language, and legal issues related to identifying probands and family members and successfully facilitating genetic testing in healthcare systems with currently available resources. Our Long-term goal is to create an effective Traceback program that is practical and sustainable in the real-world setting. The main objective of this project is to determine the acceptability, feasibility, and effectiveness of a Traceback cascade screening program in multiple populations and healthcare systems that will guide broader implementation. Our research question is in what organizational contexts and populations a Traceback program for proband identification and cascade screening of family members can be implemented, what would successful outcomes be for such programs, and what are the contextual, logistical, and legal barriers to be addressed? Our specific aims are to: 1) to explore a legal solution based on the privacy laws of all 50 states that may hinder or facilitate genetic testing of family members; 2) illuminate culturally appropriate language and communication strategies to inform women with ovarian cancer and their family members about the availability of genetic testing; 3) describe the effectiveness and feasibility of a Traceback cascade screening program in three healthcare systems; and 4) to explore the implementation outcomes related to a Traceback cascade program to provide guidance for broader dissemination of such a program.

Publications

  • DiNucci A, Henrikson NB, Jonas MC, Basra S, Blasi P, Brown J, Esplin ED, Hassen D, Hao J, Hu Y, Klinger T, Ladd I, Leppig K, Lewis M, Meyer M, Ney S, Ramaprasan A, Romagnoli K, Salvati Z, Scrol A, Schwiter R, Sheridan L, Somasundaram B, Suwannarat P, Wagner JK, Rahm AK. Feasibility and Assessment of a Cascade Traceback Screening Program (FACTS): Protocol for a Multisite Study to Implement and Assess an Ovarian Cancer Traceback Cascade Testing Program. Journal of personalized medicine. 2021 Jun 11;11. (6). PMID: 34208188
  • Henrikson NB, Wagner JK, Hampel H, DeVore C, Shridhar N, Williams JL, Donohue KE, Kullo I, Prince AER. What guidance does HIPAA offer to providers considering familial risk notification and cascade genetic testing? Journal of law and the biosciences. 2020 Dec 11;7(1):lsaa071. doi: 10.1093/jlb/lsaa071. eCollection 2020 Jan-Dec. PMID: 34221429
  • Romagnoli KM, Kulchak Rahm A, Jonas MC, Schwiter R, Klinger T, Ladd I, Salvati Z, DiNucci A, Blasi PR, Sheridan L, Scrol A, Henrikson NB. Human-Centered Design Study to Inform Traceback Cascade Genetic Testing Programs at Three Integrated Health Systems. Public health genomics. 2023;26(1):45-57. Epub 2023 Mar 3. PMID: 36871550
  • Wagner JK, Tanniru JK, Chane CA, Meyer MN. Exploring access to genomic risk information and the contours of the HIPAA public health exception. Journal of law and the biosciences. 2022 Dec 10;9(2):lsac034. doi: 10.1093/jlb/lsac034. eCollection 2022 Jul-Dec. PMID: 36518815