GIST Support International - Pediatric GIST & Carney Triad

Our WILDTYPE GIST listserv is for patients of any age with wildtype GIST (no mutations in KIT or PDGFRA or BRAF), including pediatric GIST, Carney Triad, and Carney-Stratakis GIST-paraganglioma dyad.

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. GIST without mutations in KIT or PDGFRA is referred to as wildtype GIST. About 10-12% of adult GIST patients have wildtype GIST. Young people between ages 18 and 30 years old may develop either adult-type mutant GIST or the pediatric-type wildtype GIST. Defects in succinate dehydrogenase genes are associated with Carney-Stratakis Dyad of GIST plus paraganglioma. Research to identify genetic abnormalities that may be responsible for wildtype GIST, pediatric GIST, carney-Stratakis Dyad, and Carney Triad is a very active pursuit.

JOIN Our e-mail Community

Click here to join our listserv for wildtype GIST patients (adult and pediatric) and their family members and friends.

Read Mail and Search Archives

Subscribers to our list can access the mail and searchable archives by clicking Mail & Archives.
You will be asked to “log in” with your password before viewing the archives. If you have not set up a password yet just follow the instructions to do so. Once you set up a password, as long as you do not "log off" then you will not need to enter the password again if you are still using the same computer and you have not deleted the cookie. Choose a password you can remember easily (or write it down in your wallet) so you can access the mail from a different computer while you are away from home.

CONTACT Us

To contact us about pediatric GIST, Carney Triad, or other GIST in young patients, e-mail us at this address: pediatric-gist@gistsupport.org

More Information

Please see our pages on

Physicians with Expertise in Pediatric GIST

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
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...