Localized and diffuse tenosynovial giant cell tumor: real-world results from a patient observational registry

Background Tenosynovial Giant Cell Tumor (TGCT) is a rare, locally aggressive neoplasm that adversely impact patients’ physical function and quality of life (QoL). This cross-sectional analysis leverages real-world data from the TGCT Support Patient Registry to elucidate the patient experience with TGCT and the disease burden across healthcare systems.Research design and methods A total of 497 patients from 32 countries, 71.4% (n = 355) with diffuse-TGCT (D-TGCT), 18.9% (n = 94) with localized TGCT (L-TGCT), and 9.7% (n = 28) with unspecified TGCT were included in this cross-sectional analysis of the TGCT Support Registry.Results A majority of patients (61.2%, n = 304) were diagnosed by orthopedic/sports medicine surgeons, half (n = 248) were misdiagnosed prior to their TGCT diagnosis, and 32% (n = 278) of patients were diagnosed > 24 months following symptom onset. 79.1% (n = 393) of all patients had ≥ 1 resection and 63% of those patients reported ≥ 1 recurrence. Of those patients that had recurrence following resection, 59% had ≥ 2 recurrences. 23% of patients (n = 115) changed occupations or prematurely retired due to TGCT and the proportion of patients increased with > 2 surgeries.Conclusion Greater awareness of TGCT among HCPs is needed to facilitate diagnosis and referral to multidisciplinary teams is warranted to reduce recurrence rates, number of surgical interventions, and improve QoL.