Fight Colorectal Cancer (Fight CRC) is proud to announce that its Genetics and Family History Advisory Council is leading an initiative, alongside nearly 150 patient advocacy organizations, medical societies, and medical professionals, to submit an application to the International Classification of Diseases (ICD-10) Coordination and Maintenance Committee to create a code specifically for Lynch syndrome. This effort is crucial for healthcare providers to accurately identify and manage Lynch syndrome patients, leading to improved care and continued advancements in research.

Lynch syndrome, a hereditary condition, significantly increases the lifetime risk of colorectal cancer (CRC) and other cancers. Early identification through precise coding can facilitate timely surveillance and intervention, ultimately saving lives. Accurate ICD-10 coding is crucial for monitoring Lynch syndrome patients, ensuring they receive appropriate surveillance, and enabling personalized treatment plans. Additionally, precise coding would facilitate the use of national-level data sets to monitor treatment outcomes and drive research and quality improvement efforts in the hereditary cancer community.

The Council, comprised of esteemed experts in the field, is spearheading this effort:

• Dr. Peter P. Stanich, Gastroenterologist and Associate Professor at the Ohio State University Wexner Medical Center
• Heather Hampel, MS, LGC, Professor in the Department of Medical Oncology and Research; and Associate Director of the Division of Cancer Genomics at City of Hope National Cancer Center
• Andrea Dwyer, BS, Advisor to Fight Colorectal Cancer, University of Colorado Cancer Center
• Dr. Swati G. Patel, Director of the Gastrointestinal Cancer Risk and Prevention Center; and Staff Physician at the Rocky Mountain Regional Veterans Affairs Hospital
• Dr. Jennifer M. Weiss, Associate Professor in the Division of Gastroenterology and Hepatology; and Director of the UW Gastrointestinal Genetics Clinic

Lynch syndrome affects approximately 1 in every 279 individuals globally and 1 in every 25-35 individuals with CRC. Individuals with Lynch syndrome are more likely to develop CRC at an age younger than 50. They also face heightened risks of endometrial cancer and several other types of cancer.

“As a Lynch syndrome patient, the odds of additional cancers in my lifetime is between 20-60% - And, without regular surveillance, can be life threatening to me,” stated Wenora Johnson, Fight CRC Research Advocate and 3X cancer survivor. “This is why codes are important, as they can bring better research and understanding of Lynch syndrome.”

“I look forward to Lynch syndrome being recognized with its own ICD10 code,” stated Dr. Peter Stanich. “This will immediately help improve quality of care by allowing for better tracking of patients and help with insurance coverage of the necessary surveillance colonoscopies and other testing. In the long view, this will also facilitate a major step forward in research through the use of large data sets which utilize ICD10 coding. This will allow researchers to track outcomes and practice patterns at a national scale.”

ICD-10-CM is used for medical claim reporting in all healthcare settings and is a standardized classification system of diagnosis codes that represent conditions and diseases, related health problems, abnormal findings, signs and symptoms, injuries, external causes of injuries and diseases, and social circumstances.

Fight CRC’s application to create specific ICD-10 coding for Lynch syndrome gathered broad support:

• Association of Black Gastroenterologists and Hepatologists
• AliveAndKickn
• American Cancer Society
• American Cancer Society Cancer Action Network
• American College of Gastroenterology
• American Society for Gastrointestinal Endoscopy
• California Colorectal Cancer Coalition
• CancerCare
• Catch It In Time
• Cheeky Charity
• Collaborative Group of the Americas on Inherited Gastrointestinal Cancer
• Colon Cancer Alliance for Research & Education for Lynch Syndrome
• Colon Cancer Coalition
• Colon Cancer Prevention Project
• Colorectal Cancer Alliance
• Colorectal Cancer Equity Foundation
• GH Foundation
• Hitting Cancer Below the Belt
• Jacqueline Rush Foundation
• Lynch Syndrome Screening Network
• Man Up to Cancer
• National Comprehensive Cancer Network
• National Society of Genetic Counselors
• NCGenetics
• OECI Comprehensive Cancer Centre, St James Hospital
• One Cancer Place
• Paltown Development Foundation
• Raymond Foundation & GI Cancers Alliance
• Ruesch Center for the Cure of GI Cancers
• The Blue Hat Foundation
• The Hereditary GI Cancer Prevention Program at the Ohio State University Wexner Medical Center
• The Lynch Syndrome Screening Network
• UCHealth University of Colorado Hospital
• United Ostomy Associations of America, Inc.
• Washington Colon Cancer Stats
• West Virginia University Cancer Institute
• Alexandra Capasso, Genetic Counselor, City of Hope
• Andrea Jean Dwyer, Program Director Colorado Cancer Screening Program, University of Colorado Cancer Center
• Ann Bunnell, Genetic Counselor, Texas Oncology
• Anu Chittenden, Genetic Counselor, Dana-Farber Cancer Institute
• Aparajita Singh, Associate Clinical Professor, University of California San Francisco
• Ashley Mochizuki, Associate Genetic Counselor, City of Hope
• Beth Dudley Yurkovich, Certified Genetic Counselor, University of Pittsburgh
• Bethany Kelly, MS, CGC, Genetic Counselor, CHI Saint Joseph Health Cancer Care
• Bita Nehoray, Manager, Genetic Counseling, City of Hope
• Brittany Glassett, PA-C, UCHealth
• Brittany Szymaniak, Genetic Counselor, Northwestern Medicine
• Bryson Katona, MD, PhD, Assistant Professor of Medicine, Collaborative Group of the Americas on Inherited Gastrointestinal Cancer President, University of Pennsylvania
• Carly Grant, Cancer Genetic Counselor, Massachusetts General Hospital Cancer Center
• Carol Burke, MD, Cleveland Clinic
• Carol Ko, Genetic Counselor Supervisor, Providence
• Carol Koch, Patient
• Catherine Whitworth, Program Coordinator, WV Program to Increase Colorectal Cancer Screening
• Cheryl Lauren Meguid, Nurse Practitioner, University of Colorado Hospital
• Christina Fujii, Genetic Counselor, City of Hope
• Christine Drogan, Certified Genetic Counselor, University of Chicago
• Cindy L. O'Bryant, Professor/Clinical Pharmacist, University of Colorado Cancer Center
• Connie Zuo, Physician Assistant, University of Colorado Medicine (CU Medicine)
• Crystal Fogleman, Oncology Nurse, Invitae
• Danielle Marino, MD, University of Rochester
• Danielle Pastor, Associate Program Director, National drInstitutes of Health Hematology Oncology Fellowship Program; Chief, Medical Oncology Consult Service, National Cancer Institute, National Institutes of Health
• Dawn Nixon, Genetic Counselor, Ascension St. Vincent Cancer Care
• Deborah Cragun, Director, Genetic Counseling Graduate Program, University of South Florida
• Deepika Nathan, HS Associate Clinical Professor, Genetic Counselor, University of California Irvine School of Medicine
• Devin Cox, Genetic Counselor, University of Kansas Cancer Center
• Dillon van den Berg, Genetic Counselor, Providence Mission Hospital
• Douglas Riegert-Johnson, MD, Consultant of Gastroenterology, Mayo Clinic
• Ed Esplin, Physician, Clinical Geneticist, Invitae
• Elena Strait, Genetic Counselor, Penrose Hospital / CommonSpirit Health
• Elise Sobotka, MS, MPH, CGC, Genetic Counselor, City of Hope National Medical Center
• Elizabeth Lynn, Nurse Practitioner, University of California, San Francisco (UCSF) Hereditary Cancer Clinic
• Elyssa Zukin, Genetic Counselor, City of Hope
• Emily Toegel, MD, University of Colorado Anschutz Medical Campus
• Emma Keel, Genetic Counselor, University of Chicago
• Francesca Tubito-Massarano, Genetic Counselor, Weill Cornell Medicine
• Gayle Patel, Certified Genetic Counselor, Texas Oncology
• Gregory Austin, Professor Medicine, University of Colorado
• Gregory Idos, Associate Professor of Medicine, City of Hope National Medical Center
• Holli Loomans-Kropp, Assistant Professor, The Ohio State University
• Hunaydah Elfarawi, Genetic Counselor, City of Hope National Medical Center
• Jaime Jessen, Genetic Counselor, Dynacare
• Jamilyn Zepp, Genetic Counselor, Kaiser Permanente Center for Health Research
• Jamina Oomen-Hajagos, PhD, MS, Genetic Counselor, GeneDx
• Jennifer Weiss, MD, MS, Director, University of Wisconsin GI Genetics Clinic, University of Wisconsin School of Medicine and Public Health
• Jordyn Koehn, Clinical Genetic Counselor, The University of Kansas Cancer Center
• Joshua Smith, Resident Physician, University of Michigan Medicine
• Julia Martinez, Genetic Counselor, University of California Davis Health
• Karen Vikstrom, Genetic Counselor, NorthBay Cancer Center
• Kathryn Reyes, Genetic Counselor, City of Hope
• Kathryn Valdez, RSM, Invitae
• Kristen Shannon, Director, Massachusetts General Hospital Cancer Center Genetics Program, Mass General Cancer Center
• Kristina Markey, Genetic Counselor, University of Colorado S
• Lauren Gima, Senior Genetic Counselor, City of Hope
• Lee-may Chen, MD, Professor, UCSF Helen Diller Family Comprehensive Cancer Center
• Leigh Stout, Genetic Counselor, Indiana University Health
• Leila Jamal ScM, PhD, Genomics Education Specialist, National Cancer Institute
• Leslie Van Nostrand, RN - Nurse Navigator, UCHealth
• Leticia Valadez, Manager, Practice Management, City of Hope National Medical Center, Division of Clinical Cancer Genetics
• Linda H Rodgers-Fouche, Genetic Counselor, Massachusetts General Hospital
• Lisa Ku, Genetic Counselor, University of Colorado
• Lisen Axell, Instructor, Medicine-Medical Oncology, University of Colorado
• Lucia Richter Paz, MD, Instituto Oncológico del Oriente Boliviano
• Marcela Mora, RN, UCHealth
• Margaret R. Klehm, Nurse Practitioner, Dana-Farber Cancer Institute
• Melany Cruz, Genetic Counselor, Massachusetts General Hospital
• Melissa Fuller, Program Manager Oncology Service Line, UCHealth
• Michael Restrepo, Licensed Certified Genetic Counselor, City of Hope
• Michelle Hall, Genetic Counselor, Mercy Health
• Michelle Springer, Genetic Counselor, University of Colorado
• Mohammad Ali Abbass, Surgeon, Northwestern University
• Natalie Sivak, M.D., University of Colorado Denver
• Natalya Veneychuk, RN, UCHealth
• Nicholas Bartell, MD, University of Rochester Medical Center
• Nikhil Madhuripan, MD, Interim Section Chief of Abdominal Imaging, University of Colorado Anschutz Medical Campus School of Medicine
• Paul E. Wise, MD, Professor of Surgery, Washington University in St. Louis School of Medicine
• Peter P Stanich, MD, Associate Professor, The Hereditary GI Cancer Prevention Program, The Ohio State University Wexner Medical Center
• Priyanka Kanth, MD, MedStar Georgetown University Hospital
• Rachel Hodan, Genetic Counselor IV, Stanford Health Care
• Reed Weiss, DNP, ARNP, University of Colorado Cancer Center
• Rikki Caffrey, Director, Ethics, Advocate Health
• Robert Hollis, Assistant Professor, University of Alabama at Birmingham
• Samantha Goold, Genetic Counselor, Providence
• Samara Rifkin, Gastroenterologist, University of Michigan
• Sanjana Mehrotra, Associate Professor, University of Colorado
• Sara Mokhtary, Genetic Counselor, Texas Oncology
• Sarah Lindsey Davis, MD, University of Colorado Cancer Center
• Sarah Sturm, Genetic Counselor, University of California, San Francisco
• Stephanie Cohen, Genetic Counselor, Ascension St. Vincent
• Steven H. Erdman, Professor-Clinical, Pediatrics, The Ohio State University
• Sudeep Banerjee, MD, Kaiser Permanente
• Susan C Eason, Program Director, WV Program to Increase Colorectal Cancer Screening, WVU Cancer Institute
• Swati G. Patel, Associate Professor of Medicine, University of Colorado Anschutz Medical Center
• Timothy Yen, MD, Loma Linda University
• Trisha Nichols, MS, CGC, Certified Genetic Counselor/Program Coordinator, Texas Oncology (The US Oncology Network)
• Wells Messersmith, MD, Professor and Division Head of Medical Oncology, University of Colorado School of Medicine
• Wendy Rubinstein, Senior Scientific Officer, National Cancer Institute
• Xavier Llor, Professor of Medicine, Yale University

Stay updated on the outcome and future developments by following Fight CRC on social media.

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