Pediatric GIST & Carney Triad

Gastrointestinal stromal tumor (GIST) in children and adolescents is extremely rare. In contrast to adult GIST, which is usually caused by mutations in the genes for KIT or PDGFRA, most cases of GIST in children and adolescents show no mutations in these genes; this is refered to as wild-type GIST. Young people between ages 18 and 30 years old may develop either adult-type mutant GIST or the pediatric wild-type GIST. Research to identify mutations in other genes that may be responsible for pediatric GIST and Carney Triad is a very active pursuit.

To join our listserv for pediatric GIST patients and their parents and friends, click here.

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It is important to find physicians who have experience with these rare cases. The following table includes physicians identified by parents involved in our listserv. Please contact us at gsi@gistsupport.org if you wish to have another physician's name included. Click the name to link to a descriptive website, if available.

Physician	Specialty	Location
Karen Albritton, MD	pediatric oncology	Dana-Farber Cancer Institute
Cristina Antonescu, MD	pathology	Memorial Sloan Kettering Cancer Center
Francine Blei, MD	pediatric oncology	New York University Medical Center
J. Aidan Carney, MD, PhD	pathology (emeritus but still active in Carney Triad cases)	Mayo Clinic, Rochester
Katherine A. Janeway, MD	pediatric oncology	Dana Farber Cancer Institute Children's Hospital, Boston
Michael LaQuaglia, MD	pediatric surgery	Memorial Sloan Kettering Cancer Center
Jed Nuchtern, MD	pediatric surgery	Texas Children's Cancer Center
Alberto Pappo, MD	pediatric oncology	Texas Children's Cancer Center
Patrick Schöffski, MD	oncology	University Hospital Gasthuisberg of the Catholic University, Leuven, Belgium
Constantine A. Stratakis, MD	endocrinology & genetics	National Institute of Child Health & Human Development
Daniel von Allmen, MD	pediatric surgery	University of North Carolina School of Medicine
William F. Young, Jr, MD	adolescent endocrinology (for Carney Triad)	Mayo Clinic, Rochester

Useful Resources

The non-pediatric sections of our website include lots of information that is also relevant to GIST in children, adolescents, and young adults. Please check some of these pages...