Our WILDTYPE GIST listserv is for patients of any age with wildtype GIST (no mutations in KIT or PDGFRA or BRAF), including SDH-deficient GIST, 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. Many wildtype GIST patients have defects in succinate dehydrogenase function, as described further in following sections. 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.
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Click here to join our listserv for wildtype GIST patients (adult and pediatric) and their family members and friends.
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Subscribers to our list can access the mail and searchable archives by clicking Mail & Archives.
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To contact us about SDH-deficient GIST, wildtype GIST, pediatric GIST, Carney Triad, Carney-Stratakis Dyad GIST, or other GIST in young patients, e-mail us at this address: firstname.lastname@example.org
Please see our pages on
- Wildtype GIST summary
- Carney Triad
- Wildtype Expert Q&A
- Wildtype GIST Webcasts and Slideshows
- Our Stories
- Links for Young Patients
- Us and Our Docs
- Donating Tissue to Research
- NIH Clinic for SDH-Deficient and Wildtype GIST
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 email@example.com if you wish to have another physician's name included. Click the name to link to a descriptive website, if available.
|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|
|William F. Young, Jr, MD||adolescent endocrinology (for Carney Triad)||Mayo Clinic, Rochester|
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...
- Best Links
- Webcasts and Slide Shows
- GIST Publications
- Free-access GIST Publications
- For New GIST Patients
- About GIST