Grant Number:	5R01CA211723-03 Interpret this number
Primary Investigator:	Rahm, Alanna
Organization:	Geisinger Clinic
Project Title:	Implementing Universal Lynch Syndrome Screening Across Multiple Healthcare Systems: Identifying Strategies to Facilitate and Maintain Programs in Different Organizational Contexts
Fiscal Year:	2019

Project Summary/Abstract Lynch syndrome (LS) is the most common form of inherited colorectal cancer risk. People with Lynch syndrome are also at increased risk for endometrial, ovarian, gastric, small bowel, and renal cancers. Importantly, well-established clinical guidelines with strong evidence exist for cancer treatment, screening, and prevention in individuals with LS. Identification of individuals with LS is accomplished through a variety of techniques, including family and medical history evaluation, computational models, or tumor testing. The systematic screening of all colorectal tumors for LS was first recommended by the Evaluation of Genetic Application in Practice and Prevention (EGAPP) working group in 2009 and has been designated high priority by the National Academies of Science, Engineering, and Medicine working group and by the Blue Ribbon Panel. The potential public health impact to reduce cancer morbidity and mortality of this intervention supports this priority, as effective implementation of LS screening will help meet the goals of the Cancer Moonshot as well as demonstrate the promise of precision medicine. Currently, implementation of LS screening in healthcare systems remains suboptimal for a variety of reasons. LS screening involves the coordination of multiple departments and individuals across an organization, which is often difficult in large, complex, healthcare systems. Therefore, the overarching goal of this project is to utilize tools from implementation science to describe, explain, and compare decision making and other variations in LS screening implementation across multiple healthcare systems to create and evaluate in a real world setting an organizational toolkit to facilitate implementation of LS screening. Our specific aims are to (1) Describe variation in LS screening implementation across multiple healthcare systems; then (2) Explain practice variation and determine factors associated with optimal implementation; and (3) Determine the relative effectiveness, efficiency, and costs of different LS screening protocols by healthcare system; and finally to (4) Develop and test in a natural environment an organizational toolkit for LS screening. This toolkit will enable effective implementation of LS screening programs; ultimately preventing needless suffering of patients and their family members from preventable cancers, decreasing waste in healthcare system costs, and informing strategies to facilitate the promise of precision medicine.




Applying theories, models, and frameworks to help genetic counselors and students achieve clinical and professional goals.
Authors: Cragun D. , Victoria L. , Bradbury A.R. , Dean M. , Hamilton J.G. , Katz M.L. , Rahm A.K. , Mack J.W. , Resnicow K. , Kaphingst K.A. .
Source: Journal Of Genetic Counseling, 2024-10-27 00:00:00.0; , .
EPub date: 2024-10-27 00:00:00.0.
PMID: 39462976
Related Citations

Protocol for Health Risk Information Technology-Assisted Genetic Evaluation (HeRITAGE): a randomised controlled trial of digital genetic cancer risk assessment in a diverse underserved gynaecology clinic.
Authors: Bull L.E. , Webster E.M. , McDougale A. , Howard D. , Ahsan M.D. , Levi S. , Grant B. , Chandler I. , Christos P. , Sharaf R.N. , et al. .
Source: Bmj Open, 2024-09-05 00:00:00.0; 14(9), p. e082658.
EPub date: 2024-09-05 00:00:00.0.
PMID: 39237276
Related Citations

Identifying factors and causal chains associated with optimal implementation of Lynch syndrome tumor screening: An application of coincidence analysis.
Authors: Cragun D. , Salvati Z.M. , Schneider J.L. , Burnett-Hartman A.N. , Epstein M.M. , Hunter J.E. , Liang S.Y. , Lowery J. , Lu C.Y. , Pawloski P.A. , et al. .
Source: Genetics In Medicine : Official Journal Of The American College Of Medical Genetics, 2024-06-28 00:00:00.0; , p. 101201.
EPub date: 2024-06-28 00:00:00.0.
PMID: 38953292
Related Citations

Implementation of a smartphone survey and mainstreaming for genetic cancer risk assessment in a diverse, urban, Medicaid-predominant gynecology clinic: a step toward health equity.
Authors: Webster E.M. , Ahsan M.D. , McDougale A. , Sharaf R.N. , Frey M.K. .
Source: American Journal Of Obstetrics And Gynecology, 2024 Jun; 230(6), p. e108-e109.
EPub date: 2024-01-18 00:00:00.0.
PMID: 38244829
Related Citations

Population-Level Identification of Patients With Lynch Syndrome for Clinical Care, Quality Improvement, and Research.
Authors: Sharaf R.N. , Udaltsova N. , Li D. , Pai R.K. , Sinha S. , Li Z. , Corley D.A. .
Source: Jco Clinical Cancer Informatics, 2024 Jun; 8, p. e2300157.
PMID: 38838280
Related Citations

Integration and usability of a digital cancer risk stratification tool to optimize identification of patients at risk for hereditary cancers: A pilot study.
Authors: Webster E.M. , Perez L. , Ahsan M.D. , Levi S. , Chandler I. , Thomas C. , Babagbemi K. , Sharaf R.N. , Frey M.K. .
Source: Gynecologic Oncology, 2024 Apr; 183, p. 1-6.
EPub date: 2024-03-08 00:00:00.0.
PMID: 38460222
Related Citations

Personalized survivorship care: Routine breast cancer risk assessment in the gynecologic oncology clinic.
Authors: Ahsan M.D. , Webster E.M. , Wolfe I.A. , McGonigle R. , Brewer J.T. , Chandler I.R. , Weiss J.M. , Enriquez A. , Cantillo E. , Holcomb K. , et al. .
Source: Gynecologic Oncology, 2024 Apr; 183, p. 47-52.
EPub date: 2024-03-18 00:00:00.0.
PMID: 38503141
Related Citations

Development, Evaluation, and User Testing of a Decision-Making Toolkit to Promote Organizations to Implement Universal Tumor Screening for Lynch Syndrome.
Authors: Kulchak Rahm A. , Wolfinger T. , Salvati Z.M. , Schneider J.L. , Cragun D. .
Source: Public Health Genomics, 2024; 27(1), p. 136-149.
EPub date: 2024-08-19 00:00:00.0.
PMID: 39159623
Related Citations

"Go ahead and screen" - advice to healthcare systems for routine lynch syndrome screening from interviews with newly diagnosed colorectal cancer patients.
Authors: Schneider J.L. , Firemark A.J. , Gille S. , Davis J. , Pawloski P.A. , Liang S.Y. , Epstein M.M. , Lowery J. , Lu C.Y. , Sharaf R.N. , et al. .
Source: Hereditary Cancer In Clinical Practice, 2023-11-17 00:00:00.0; 21(1), p. 24.
EPub date: 2023-11-17 00:00:00.0.
PMID: 37978552
Related Citations

Chatbot Artificial Intelligence for Genetic Cancer Risk Assessment and Counseling: A Systematic Review and Meta-Analysis.
Authors: Webster E.M. , Ahsan M.D. , Perez L. , Levi S.R. , Thomas C. , Christos P. , Hickner A. , Hamilton J.G. , Babagbemi K. , Cantillo E. , et al. .
Source: Jco Clinical Cancer Informatics, 2023 Sep; 7, p. e2300123.
PMID: 37934933
Related Citations

Underrepresentation of racial and ethnic minorities in cascade testing for hereditary cancer syndromes.
Authors: Ahsan M.D. , Webster E.M. , Nguyen N.T. , Qazi M. , Levi S.R. , Diamond L.C. , Sharaf R.N. , Frey M.K. .
Source: European Journal Of Human Genetics : Ejhg, 2023 Jul; 31(7), p. 723-724.
EPub date: 2023-04-28 00:00:00.0.
PMID: 37117326
Related Citations

Web-based tool for cancer family history collection: A prospective randomized controlled trial.
Authors: Frey M.K. , Ahsan M.D. , Webster E. , Levi S.R. , Brewer J.T. , Lin J. , Blank S.V. , Krinsky H. , Nchako C. , Wolfe I. , et al. .
Source: Gynecologic Oncology, 2023 Jun; 173, p. 22-30.
EPub date: 2023-04-14 00:00:00.0.
PMID: 37062188
Related Citations

A picture is worth a thousand words: advancing the use of visualization tools in implementation science through process mapping and matrix heat mapping.
Authors: Salvati Z.M. , Rahm A.K. , Williams M.S. , Ladd I. , Schlieder V. , Atondo J. , Schneider J.L. , Epstein M.M. , Lu C.Y. , Pawloski P.A. , et al. .
Source: Implementation Science Communications, 2023-04-25 00:00:00.0; 4(1), p. 43.
EPub date: 2023-04-25 00:00:00.0.
PMID: 37098602
Related Citations

Cascade Testing for Hereditary Cancer Syndromes: Should We Move Toward Direct Relative Contact? A Systematic Review and Meta-Analysis.
Authors: Frey M.K. , Ahsan M.D. , Bergeron H. , Lin J. , Li X. , Fowlkes R.K. , Narayan P. , Nitecki R. , Rauh-Hain J.A. , Moss H.A. , et al. .
Source: Journal Of Clinical Oncology : Official Journal Of The American Society Of Clinical Oncology, 2022-12-10 00:00:00.0; 40(35), p. 4129-4143.
EPub date: 2022-08-12 00:00:00.0.
PMID: 35960887
Related Citations

What happens in the long term: Uptake of cancer surveillance and prevention strategies among at-risk relatives with pathogenic variants detected via cascade testing.
Authors: Frey M.K. , Ahsan M.D. , Badiner N. , Lin J. , Narayan P. , Nitecki R. , Rauh-Hain J.A. , Moss H. , Fowlkes R.K. , Thomas C. , et al. .
Source: Cancer, 2022-10-27 00:00:00.0; , .
EPub date: 2022-10-27 00:00:00.0.
PMID: 36305018
Related Citations

Should Health Systems Share Genetic Findings With At-Risk Relatives When the Proband Is Deceased? Interviews With Individuals Diagnosed With Lynch Syndrome.
Authors: Hunter J.E. , Schneider J.L. , Firemark A.J. , Davis J.V. , Gille S. , Pawloski P.A. , Liang S.Y. , Schlieder V. , Rahm A.K. .
Source: Journal Of Patient-centered Research And Reviews, 2022 Fall; 9(4), p. 282-289.
EPub date: 2022-10-18 00:00:00.0.
PMID: 36340570
Related Citations

Identifying patients with Lynch syndrome using a universal tumor screening program in an integrated healthcare system.
Authors: Crain P.R. , Zepp J.M. , Gille S. , Jenkins L. , Kauffman T.L. , Shuster E. , Goddard K.A.B. , Wilfond B.S. , Hunter J.E. .
Source: Hereditary Cancer In Clinical Practice, 2022-04-18 00:00:00.0; 20(1), p. 17.
EPub date: 2022-04-18 00:00:00.0.
PMID: 35436948
Related Citations

Economic Evaluation of Universal Lynch Syndrome Screening Protocols among Newly Diagnosed Patients with Colorectal Cancer.
Authors: Hao J. , Hassen D. , Gudgeon J.M. , Snyder S.R. , Hampel H. , Williams M.S. , Sharaf R.N. , Lu C.Y. , Williams J.L. , Schlieder V. , et al. .
Source: Journal Of Personalized Medicine, 2021-12-02 00:00:00.0; 11(12), .
EPub date: 2021-12-02 00:00:00.0.
PMID: 34945755
Related Citations

Leveraging Clinical Informatics Tools to Extract Cumulative Anthracycline Exposure, Measure Cardiovascular Outcomes, and Assess Guideline Adherence for Children With Cancer.
Authors: Noyd D.H. , Berkman A. , Howell C. , Power S. , Kreissman S.G. , Landstrom A.P. , Khouri M. , Oeffinger K.C. , Kibbe W.A. .
Source: Jco Clinical Cancer Informatics, 2021 10; 5, p. 1062-1075.
PMID: 34714665
Related Citations

Achieving universal genetic assessment for women with ovarian cancer: Are we there yet? A systematic review and meta-analysis.
Authors: Lin J. , Sharaf R.N. , Saganty R. , Ahsan D. , Feit J. , Khoury A. , Bergeron H. , Chapman-Davis E. , Cantillo E. , Holcomb K. , et al. .
Source: Gynecologic Oncology, 2021 Aug; 162(2), p. 506-516.
EPub date: 2021-05-19 00:00:00.0.
PMID: 34023131
Related Citations

Association of Search Query Interest in Gastrointestinal Symptoms With COVID-19 Diagnosis in the United States: Infodemiology Study.
Authors: Rajan A. , Sharaf R. , Brown R.S. , Sharaiha R.Z. , Lebwohl B. , Mahadev S. .
Source: Jmir Public Health And Surveillance, 2020-07-17 00:00:00.0; 6(3), p. e19354.
EPub date: 2020-07-17 00:00:00.0.
PMID: 32640418
Related Citations

Cascading After Peridiagnostic Cancer Genetic Testing: An Alternative to Population-Based Screening.
Authors: Offit K. , Tkachuk K.A. , Stadler Z.K. , Walsh M.F. , Diaz-Zabala H. , Levin J.D. , Steinsnyder Z. , Ravichandran V. , Sharaf R.N. , Frey M.K. , et al. .
Source: Journal Of Clinical Oncology : Official Journal Of The American Society Of Clinical Oncology, 2020-05-01 00:00:00.0; 38(13), p. 1398-1408.
EPub date: 2020-01-10 00:00:00.0.
PMID: 31922925
Related Citations

AGA institute and the joint task force on allergy-immunology practice parameters clinical guidelines for the management of eosinophilic esophagitis.
Authors: Hirano I. , Chan E.S. , Rank M.A. , Sharaf R.N. , Stollman N.H. , Stukus D.R. , Wang K. , Greenhawt M. , Falck-Ytter Y.T. , AGA Institute Clinical Guidelines Committee , et al. .
Source: Annals Of Allergy, Asthma & Immunology : Official Publication Of The American College Of Allergy, Asthma, & Immunology, 2020 05; 124(5), p. 416-423.
PMID: 32336462
Related Citations

Technical review on the management of eosinophilic esophagitis: a report from the AGA institute and the joint task force on allergy-immunology practice parameters.
Authors: Rank M.A. , Sharaf R.N. , Furuta G.T. , Aceves S.S. , Greenhawt M. , Spergel J.M. , Falck-Ytter Y.T. , Dellon E.S. , AGA Institute. Electronic address: clinicalpractice@gastro.org , Joint Task Force on Allergy-Immunology Practice Parameters collaborators. Electronic address: drdanawallace@gmail.com , et al. .
Source: Annals Of Allergy, Asthma & Immunology : Official Publication Of The American College Of Allergy, Asthma, & Immunology, 2020 05; 124(5), p. 424-440.e17.
PMID: 32336463
Related Citations

AGA Institute and the Joint Task Force on Allergy-Immunology Practice Parameters Clinical Guidelines for the Management of Eosinophilic Esophagitis.
Authors: Hirano I. , Chan E.S. , Rank M.A. , Sharaf R.N. , Stollman N.H. , Stukus D.R. , Wang K. , Greenhawt M. , Falck-Ytter Y.T. , AGA Institute Clinical Guidelines Committee , et al. .
Source: Gastroenterology, 2020 05; 158(6), p. 1776-1786.
PMID: 32359562
Related Citations

Technical Review on the Management of Eosinophilic Esophagitis: A Report From the AGA Institute and the Joint Task Force on Allergy-Immunology Practice Parameters.
Authors: Rank M.A. , Sharaf R.N. , Furuta G.T. , Aceves S.S. , Greenhawt M. , Spergel J.M. , Falck-Ytter Y.T. , Dellon E.S. , AGA Institute. Electronic address: clinicalpractice@gastro.org , Joint Task Force on Allergy-Immunology Practice Parameters collaborators. Electronic address: drdanawallace@gmail.com , et al. .
Source: Gastroenterology, 2020 05; 158(6), p. 1789-1810.e15.
PMID: 32359563
Related Citations

Health Technology Assessment Centers-an Infrastructure for Health Systems to Translate Evidence into Practice.
Authors: Sharaf R.N. , Khullar D. , Umscheid C.A. .
Source: Journal Of General Internal Medicine, 2020-01-03 00:00:00.0; , .
EPub date: 2020-01-03 00:00:00.0.
PMID: 31900729
Related Citations

Implementing universal cancer screening programs can help sustain genomic medicine programs.
Authors: Rahm A.K. , Bellcross C. , Cragun D. , Duquette D. , Hampel H. , Heald B. .
Source: Personalized Medicine, 2020 01; 17(1), p. 9-13.
EPub date: 2019-12-04 00:00:00.0.
PMID: 31797715
Related Citations

Somatic and germline sequencing in genitourinary oncology: genetics for the clinician.
Authors: Shoag J.E. , Wise D.R. , Sharaf R.N. , Sternberg C.N. .
Source: Current Opinion In Urology, 2019 07; 29(4), p. 315-318.
PMID: 31158105
Related Citations

The Healthcare Systems Research Network (HCSRN) as an Environment for Dissemination and Implementation Research: A Case Study of Developing a Multi-Site Research Study in Precision Medicine.
Authors: Rahm A.K. , Ladd I. , Burnett-Hartman A.N. , Epstein M.M. , Lowery J.T. , Lu C.Y. , Pawloski P.A. , Sharaf R.N. , Liang S.Y. , Hunter J.E. .
Source: Egems (washington, Dc), 2019-04-12 00:00:00.0; 7(1), p. 16.
EPub date: 2019-04-12 00:00:00.0.
PMID: 30984796
Related Citations

Increased risk of colon cancer and osteogenic sarcoma in Diamond-Blackfan anemia.
Authors: Vlachos A. , Rosenberg P.S. , Atsidaftos E. , Kang J. , Onel K. , Sharaf R.N. , Alter B.P. , Lipton J.M. .
Source: Blood, 2018-11-15 00:00:00.0; 132(20), p. 2205-2208.
EPub date: 2018-09-28 00:00:00.0.
PMID: 30266775
Related Citations

Implementing universal Lynch syndrome screening (IMPULSS): protocol for a multi-site study to identify strategies to implement, adapt, and sustain genomic medicine programs in different organizational contexts.
Authors: Rahm A.K. , Cragun D. , Hunter J.E. , Epstein M.M. , Lowery J. , Lu C.Y. , Pawloski P.A. , Sharaf R.N. , Liang S.Y. , Burnett-Hartman A.N. , et al. .
Source: Bmc Health Services Research, 2018-10-30 00:00:00.0; 18(1), p. 824.
EPub date: 2018-10-30 00:00:00.0.
PMID: 30376847
Related Citations