14/09/2026
We are honored to present an important initiative to the CDC THIS week. We are proposing to establish a new, unified ICD-10 code for tenosynovial giant cell tumor ( ), aligning coding with clinical practice and pathology understanding.
Today, patients with TGCT can receive dozens of different diagnostic codes (46!), including PVNS, giant cell tumor, synovitis, nodular tenosynovitis, neoplasm of uncertain behavior, and others. Since 2013, PVNS has been considered a historical term that is no longer recommended by the WHO, reflecting the recognition of TGCT as a tumor disease with defined molecular drivers. In the case of the PVNS code, it is under musculoskeletal disorders similar to osteoarthritis, misrepresenting the biology of TGCT. Additionally, patients received variable access to standard specialized clinical care based simply on the ICD-10 code used.
With the assistance of clinical experts: Drs Matthew DiCaprio, Gabriel Tinoco, Nicholas Bernthal, and Alysia Kemp, our proposal would align diagnostic coding with current clinical practice, adding a TGCT-specific code under the oncology category within the ICD-10 system. We also propose to mark PVNS as historical, no longer acceptable for use.
Why does this matter?
🦓 Recognition: TGCT is a locally aggressive tumor, and its classification should reflect the biology of the disease.
🦓 Access to care: More appropriate classification may help support access to imaging, oncology services, and other resources for patients with TGCT that were not received with PVNS coding.
🦓 Research: A unified code would allow us to better understand how many patients have TGCT, how they are treated, and what outcomes they experience.
🦓 Consistency: Patients should not receive different diagnoses simply because different historical names exist for the same disease. This impacts their ability to receive updated and relevant education on their disease.
During the September 15-16 meeting, on behalf of the initiative, we will present this proposal to the CDC’s ICD-10 Coordination and Maintenance Committee for consideration for the 2027 ICD-10 coding structure.
This initiative has been years in the making, and we’re incredibly proud to represent the TGCT community in this process. A coding change may sound technical, but how a disease is classified affects whether it can be seen, counted, researched, and appropriately treated. It also impacts patients’ ability to find accurate education.
We are honored to help move this effort forward for my community and hopeful that this will be an important step toward improving care for the thousands of people living with TGCT.
We are grateful for the support of Connective Tissue Oncology Society and Musculoskeletal Tumor Society ☺️
Stay tuned for the public comment period!
https://www.cdc.gov/nchs/data/icd/topic-packet-september-2026.pdf
