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Pediatric & Carney Triad GIST

Pediatric & Carney Triad GIST

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.

Please see our pages on

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.

PhysicianSpecialtyLocation
Karen Albritton, MDpediatric oncologyDana-Farber Cancer Institute
Cristina Antonescu, MDpathologyMemorial Sloan Kettering Cancer Center
Francine Blei, MDpediatric oncologyNew York University Medical Center
J. Aidan Carney, MD, PhDpathology (emeritus but still active in Carney Triad cases)Mayo Clinic, Rochester
Katherine A. Janeway, MDpediatric oncologyDana Farber Cancer Institute
Children's Hospital, Boston
Michael LaQuaglia, MDpediatric surgeryMemorial Sloan Kettering Cancer Center
Jed Nuchtern, MDpediatric surgeryTexas Children's Cancer Center
Alberto Pappo, MDpediatric oncologyTexas Children's Cancer Center
Patrick Schöffski, MDoncologyUniversity Hospital Gasthuisberg of the Catholic University, Leuven, Belgium
Constantine A. Stratakis, MDendocrinology & geneticsNational Institute of Child Health & Human Development
Daniel von Allmen, MDpediatric surgeryUniversity of North Carolina School of Medicine
William F. Young, Jr, MDadolescent 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...



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