Tenosynovial giant cell tumors (TGCTs) are a rare type of benign tumor that form on the synovium, the membrane that lines the inside of the joints and also forms part of the tendon sheath. Because TGCTs are rare, finding information can be difficult. Here, we list four resources that may be helpful to patients or loved ones of patients who want to know more about TGCTs.
A quick note that may help with your research: There are two main subtypes of TGCTs, pigmented villonodular synovitis (PVNS) and giant cell tumor of the tendon sheath (GCTTS). Depending on the particular diagnosis you are interested in, you may want to search for one of these terms.
GARD: Part of the National Institutes of Health (NIH), the Genetic and Rare Disease Information Center, or GARD, is a great starting point for learning about TGCTs, with summary information about symptoms, diagnosis, and treatment, as well as a list of links to learn more.
NORD: The National Organization for Rare Disorders (NORD) is an excellent starting place any time you need information about a rare disease. The page on TGCTs gives a great overview of the disease, including the multiple subtypes and the different symptoms. NORD also includes information on the current research into the causes of TGCTs and investigational therapies.
ClinicalTrials.gov: Research into TGCTs is ongoing, and patients who want to help advance the medical community’s understanding of this disease may want to apply to participate in a clinical trial. Visit the site to search for clinical trials focusing on TGCTs.
AAOS: The standard therapy for TGCTs is surgery, which is likely to be performed by an orthopedic surgeon. If you need to find an orthopedic surgeon who is experienced in the surgery you need, the American Academy of Orthopaedic Surgeons has a search tool that allows you to find surgeons by geographic location and the joints they specialize in.
Sources: National Organization of Rare Disorders.... + 2
- National Organization of Rare Disorders. “Rare Disease Database: Tenosynovial Giant Cell Tumor.”
- Genetic and Rare Disease Information Center. “Pigmented villonodular synovitis.”
- American Academy of Orthopaedic Surgeons. “Find an Orthopaedist.”
