Center for Cancer Research Rare Tumor Clinics
Each year, staff at the Center for Cancer Research and the MyPART team host clinics on select rare cancers at the NIH Clinical Center in Bethesda, MD. These clinics include:
- Pediatric and Wild-type GIST
- Medullary Thyroid Carcinoma
- Pediatric Chordoma
During these one- to three-day meetings, people with the specific rare tumor and experts from around the country meet to learn more about the tumor from each other. Advocacy groups play an important role in helping us design these clinics. They can tell us what matters most to people with the tumor and find the right experts, so we study the most important issues.
NIH Pediatric and Wild-type GIST Clinic
The NIH Pediatric and Wild-type GIST Clinic started in 2008 to learn about gastrointestinal stromal tumors (GIST). Many GISTs have mutations in the KIT or PDGFR genes, but GISTs that don’t have mutations in these genes were not well understood. These “wild-type” GISTs had no treatment options. This group includes most GISTs that occur in children. Because of the data collected in the clinic, it is now known that these tumors can form when succinate dehydrogenase (SDH) isn’t working properly. This is giving scientists new ideas for how to treat these tumors.
Medullary Thyroid Carcinoma Clinic
The first medullary thyroid carcinoma clinic was held in 2018. This clinic brought together people whose tumor had started growing again after they had treatment. During the first clinic, experts talked about what patients should try next. Given that we have the clinic annually, we hope to find new clues about how to treat this tumor will arise to discuss.
Pediatric Chordoma Clinic
There are treatment trials for adult chordoma but children with chordoma may not be able to join the trials. Chordoma in children grows faster and can have different mutations than adult chordoma. We are planning a clinic to focus on children and young adults with chordoma in 2019. We will focus on how to detect chordoma. We will also learn how to use patients’ symptoms to make better treatments.