Socioeconomic Impacts of Neighborhood on TGCT Care
Researchers wanted to understand whether where someone lives affects the care they receive for TGCT. Researchers at TGCT Support analyzed findings collected from 574 adults in the TGCT Support Patient Registry across the United States and compared people living in neighborhoods with more economic challenges (e.g., less resources/access, lower income) to those living in less disadvantaged neighborhoods (e.g., those with more resources/access, higher income, higher education). The study found that people living in more disadvantaged neighborhoods were less likely to receive medication to treat TGCT, more likely to need joint replacement surgery, and more likely to have their tumor come back after surgery. When researchers considered whether patients had access to specialized academic multidisciplinary care teams, many of the differences in treatment became much smaller. This suggests that access to expert care plays an important role in the treatments patients receive.
Overall, the findings show that where you live and your access to specialized TGCT care may influence your treatment options and outcomes. Expanding access to multidisciplinary teams could help ensure that everyone with TGCT has the opportunity to receive the most appropriate care and achieve the best possible outcomes, regardless of where they live.
Impact of Socioeconomic Status on the Treatment of TGCT
Similar to the prior study, researchers assessed information 574 adults enrolled in the TGCT Support Patient Registry across the United States. To measure neighborhood disadvantage, they used the Area Deprivation Index (ADI), which considers factors such as income, education, employment, and housing.
The study found that people living in the most disadvantaged neighborhoods faced more challenges throughout their TGCT journey. They were more likely to be misdiagnosed, wait longer to receive the correct diagnosis, and undergo more surgeries. They were also more likely to need a joint replacement, more likely to have their tumor come back after treatment, and less likely to receive medications that treat TGCT throughout the body (systemic therapy). In addition, none of the patients from the most disadvantaged neighborhoods participated in a clinical trial, which may limit access to new treatment options.
Overall, these findings suggest that social and economic factors can influence how quickly TGCT is diagnosed, what treatments patients receive, and how well they do over time. Improving access to specialized care, effective treatments, and clinical research opportunities may help reduce these differences and ensure that all people with TGCT receive the best possible care, regardless of where they live.
This was presented at the Connective Tissue Oncology Society (CTOS) conference in 2025.
We published a pediatric-specific analysis using patient registry data from the TGCT Support Registry. The article is entitled "Pediatric patients with tenosynovial giant cell tumor: real-world evidence from an observational registry" and can be found below. A patient version has been created, along with several translated versions. We are so grateful for everyone's contribution that made this possible!
We published our first medical journal article using patient registry data from the TGCT Support Registry. The article is entitled "Localized and Diffuse Tenosynovial Giant Cell Tumor: Real-World Results from a Patient Observational Registry" and can be found below. A patient version has been created, along with several translated versions. This would not be possible without patients engaging with our patient registry and being dedicated to our mission of creating resources and disseminating research for TGCT. Thank each and every one of you! If you'd like to join our registry, check it out here.
