(Pittsburgh, PA) – Sunday, October 1, 2023 – More than two years of advocacy by the Desmoid Tumor Research Foundation (DTRF) has led to the approval by the Center for Disease Control (CDC) of new codes specific to the diagnosis of desmoid tumor, which also identify tumor location. The new codes go into effect today, October 1, 2023.
Previously, desmoid tumors were assigned to the former code D48.1, “Neoplasm of uncertain behavior of connective and other soft tissue.” This same broad code was also assigned for many other types of soft tissue neoplasms. In accordance with a rigorous multi-step process to request code changes, the DTRF first requested specific desmoid tumor diagnosis codes in the summer of 2021. On September 14, 2021, the proposal was presented by Dr. Breelyn Wilky to the ICD-10 Coordination and Maintenance Committee, co-chaired by the CDC. Following a review and comment period the finalized proposal was again presented to the Committee in March of 2022. Approval of the codes below was made public in April of 2023, and the new codes are in effect as of October 1, 2023.
- D48.1 Neoplasm of uncertain behavior of connective and other soft tissue
- D48.11 Desmoid tumor
- D48.110 Desmoid tumor of head and neck
- D48.111 Desmoid tumor of chest wall
- D48.112 Desmoid tumor, intrathoracic
- D48.113 Desmoid tumor of abdominal wall
- D48.114 Desmoid tumor, intraabdominal Desmoid tumor of pelvic cavity
- Desmoid tumor of pelvic cavity
- Desmoid tumor, peritoneal, retroperitoneal
- D48.115 Desmoid tumor of upper extremity and shoulder girdle
- D48.116 Desmoid tumor of lower extremity and pelvic girdle
- Desmoid tumor of buttock
- D48.117 Desmoid tumor of back
- D48.118 Desmoid tumor of other site
- D48.119 Desmoid tumor of unspecified site
- D48.19 Other specified neoplasm of uncertain behavior of connective and other soft tissue
- D48.11 Desmoid tumor
To clarify, D48.1 is no longer a valid diagnosis code. It is now a category heading. The specific codes that are now used for desmoid tumors are shown in the red brackets and range from D48.110-D48.119. For more detailed information on using the codes, please visit dtrf.org/clinicians-researchers/desmoid-icd-10-codes/.
These new codes were published in the CDC’s Comprehensive Listing of ICD-10-CM Files as part of the formal FY 2024 ICD-10-CM. Linda Holtzman, MHA, RHIA, CCS, CCS-P, CPC, COC, a professional coder with Clarity Coding, consulted with the DTRF during this process.
By identifying desmoid tumors distinctly and by tumor location, the new codes will improve communication, reduce paperwork for physicians, and improve claims processing efficiency for insurers, all of which will benefit patients in the long run. Distinct codes will also allow researchers to analyze “real world” data on desmoid tumors toward a better understanding of its course and the effectiveness of treatments.
Although the new codes apply only to the US, other countries that follow the US version of the coding system may consider adopting them into their own coding systems.
The DTRF is facilitating the customary coding education rollout through outreach to the desmoid tumor community of clinicians, researchers, patients, and caregivers, along with outreach to sarcoma organizations and coding communities.
About The Desmoid Tumor Research Foundation
The Desmoid Tumor Research Foundation (DTRF) was co-founded in 2005 by Jeanne Whiting and Marlene Portnoy, with the mission of facilitating and funding desmoid tumor research and supporting patients with information. The DTRF’s mission is to aggressively fund research to accelerate the development of improved therapies and ultimately find a cure for desmoid tumors. We collaborate with dedicated researchers and clinicians worldwide to improve the lives of patients through education, awareness, and support. Every year the foundation’s progress has gained momentum with new clinical trials, emerging therapies, and important discoveries about the disease coming to fruition. The DTRF has been the recipient of the National Organization of Rare Disorders Abby S. Meyers Leadership Rare Impact Award, and the Global Genes’ Champions of Hope Rare Champion in Advocacy Award. For more information, please visit www.dtrf.org.
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Communications Manager, DTRF