Jayne Bressington, Patient Director of the PAWS-GIST Initiative & Trustee of GIST Support UK The first national Pediatric, Adolescent, Wild-type and Syndromic GIST (PAWS GIST) clinic in the United Kingdom was held on [...]
A Wildtype GIST Clinic has been announced by the National Institutes of Health, USA. The upcoming “Pediatric and Wildtype GIST Clinic” at the NIH is scheduled for June, 10th-12th, 2015. There are spots available for [...]
NIH Clinic Participants From the moment I landed at the Washington Reagan Airport to the time I took off to fly back home, the Pediatric and Wildtype GIST Clinic at the National Institutes [...]
Dr. Sosipatros Boikos, a graduate of University of Crete in Greece, very early and while he was a first year medical student, developed an interest in cancer genetics. After graduating from medical school, he came to the National Institutes of Health as a Visiting Research Fellow to work on the genetics of Wildtype gastrointestinal stromal tumors—those GIST tumors without a KIT or PDGFRA mutation—under the supervision of Dr. Constantine Stratakis, the researcher who identified Carney-Stratakis Syndrome.
The Clinic is a collaboration between clinicians and researchers to collect data, investigate and develop treatment for Gastrointestinal Stromal Tumor patients who do not have either c-KIT or Platelet -Derived Growth Factor Receptor alpha (PDGFRA) mutations. This includes patients with Carney’s Triad, Carney- Stratakis Dyad, and Wildtype GIST. These tumors frequently stain negatively for a protein called Succinate Dehydrogenase, a condition referred to as being Succinate Dehydrogenasedeficient (SDH-deficient). There are currently three clinical trials in development for this population.
