Improves Early Detection of Hereditary Condition Linked to Increased Risk of Colorectal Cancer
Fight Colorectal Cancer (Fight CRC) announced that its Genetics and Family History Advisory Council, working alongside a group of nearly 150 patient advocacy organizations, medical societies, and medical professionals, successfully petitioned the International Classification of Diseases (ICD-10) Coordination and Maintenance Committee to establish a code specifically for Lynch syndrome and allows a path for inclusion of BRCA 1, BRCA 2 and Li Fraumeni.
The new ICD-10 codes represent a critical advancement in the identification, tracking, surveillance, and study of hereditary cancer syndromes. Accurate and specific coding will play a critical role in helping healthcare providers, researchers, health systems, and life sciences companies accurately identify genetic and hereditary syndromes earlier, leading to improved care and continued advances in research.
Specifically for colorectal cancer- Lynch syndrome, a hereditary condition, significantly increases the lifetime risk of colorectal cancer (CRC) and other cancers. It affects approximately 1 in every 279 individuals worldwide and is present in an estimated 1 in every 25-35 individuals diagnosed with colorectal cancer. Earlier identification through precise diagnostic coding can facilitate timely surveillance and intervention, ultimately saving lives. In addition, Li-Fraumeni syndrome is associated with a broad range of cancers, often occurring at unusually young ages. Women with BRCA1 or BRCA2 mutations face up to a 60–70% lifetime risk of breast cancer. Ensuring these genetic and hereditary syndromes have designated ICD-10 codes provides great paths to prevention and early detection strategies.
Accurate ICD-10 coding is crucial for monitoring genetic and hereditary syndromes, ensuring they receive appropriate surveillance, and enabling personalized treatment plans. Additionally, precise coding will facilitate the use of national-level data sets to monitor treatment outcomes, inform AI-powered analytics capabilities, and drive research and quality improvement efforts in the hereditary cancer community.
“Accurate, precise medical coding for a condition like Lynch syndrome and the additional hereditary syndromes is so critical because it is the foundation for how the patient journey is tracked over time, giving providers, researchers, and life sciences professionals a more granular, real-world understanding of how the disease presents and progresses, and its role as a precursor to other forms of cancer,” said Anjee Davis, CEO of Fight CRC. “I’m so proud of the work our team has done to rally a world-renowned group of experts to support this initiative and successfully secure an ICD-10 code for Lynch syndrome and then further support the inclusion of the BRCA 1, BRCA 2 and Li Fuermini codes.
Among the group of esteemed experts who worked with Fight CRC to secure the new ICD-10 codes were:
- Peter P. Stanich, MD, Gastroenterologist and Associate Professor,The Ohio State University Wexner Medical Center; Fight CRC Medical Advisory Board
- Heather Hampel, MS, CGC, Professor, Department of Medical Oncology and Research; Associate Director, Division of Cancer Genomics, City of Hope National Cancer Center
- Andrea Dwyer, MPH, Director, Colorado Cancer Screening Program (CCSP); Fight Colorectal Cancer Medical Advisory Board
- Swati G. Patel, MD, Director, of the Gastrointestinal Cancer Risk and Prevention Center;Staff Physician, Rocky Mountain Regional Veterans Affairs Hospital
- Jennifer M. Weiss, MD, Associate Professor, Division of Gastroenterology and Hepatology; Director, University of Wisconsin Gastrointestinal Genetics Clinic
“As a public health practitioner and advocate, I am excited about the impact we could have for stronger tracking of research and data that will drive better care for those with genetic syndromes and their families,” said Dwyer. “It is critical that Lynch is included as an ICD-10 measure.”
Fight CRC’s application to create specific ICD-10 coding for Lynch syndrome gathered broad support from the following organizations and individuals:
- Association of Black Gastroenterologists and Hepatologists
- AliveAndKickn
- American Cancer Society
- American Cancer Society Cancer Action Network
- American College of Gastroenterology
- American Gastroenteroligical Association
- 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
For more information on Fight CRC’s advocacy efforts to improve early detection and treatment of colorectal cancer, please visit www.fightcolorectalcancer.org.