The NIH pediatric/young adult chordoma clinic and natural history study: Making advances in a very rare tumor.
Liny JohnHannah SmithMaran IlanchezhianRobin LockridgeKarlyne M ReillyMargarita RaygadaEva DombiAbby SandlerBarbara J ThomasJohn GlodMarkku MiettinenTaryn AllenJosh SommerJoan LevyShannon LozinskyDavid DixEric BouffetShannon MacDonaldDebraj MukherjeeCarl H SnydermanNicholas R RowanRobert MalyapaDeric M ParkChristopher HeeryPaul A GardnerGregory M CoteSarah FullerJohn A ButmanSadhana JacksonJames L GulleyBrigitte C WidemannMary Frances WedekindPublished in: Pediatric blood & cancer (2023)
A multidisciplinary expert clinic was feasible and successful in improving understanding of pediatric chordoma. While multimodal approaches have all been employed, treatment for PDC has been inconsistent and a recommended standardized treatment approach has not been defined. Centralized efforts, inclusive of specialized chordoma-focused clinics, natural history studies, and prospective analyses will help in the standardization of care for this challenging disease.