GIST Support International - Donating Tissue to Research

Donating Tissue to Research on Pediatric, Carney Triad, and wildtype GIST

The samples of tumors removed from patients during surgery are extremely valuable to researchers who are striving to identify the causes of GIST in children, adolescents, and young adults. Only when the cause has been identified can a cure be found.

Two types of samples are helpful:

samples from past surgery
- a paraffin block of tissue or unstained slides
- can be requested through the pathology department o the hospital where the surgery was performed
samples from upcoming surgery
- flash frozen tissue samples
- must be requested through your surgeon and the pathology department prior to the operation.

If you are scheduling surgery for yourself or your child, please consider having frozen tissue samples saved to donate to research. You can arrange for this through your surgeon if you mention it in advance. If you can send archived samples from past surgeries, including unstained slides and paraffin blocks of tissue, those are also helpful.

Worthy researchers include the following (listed in alphabetical order). Please contact the investigator for instructions on completing any needed paperwork and having the samples shipped.

Cristina R. Antonescu, MD Department of Pathology Memorial Sloan-Kettering Cancer Center 1275 York Ave. New York, NY 10021 Phone: 212-639-5721 E-mail: antonesc@mskcc.org
J. Aidan Carney, MD, PhD, FRCP Emeritus Professor of Pathology Plummer North 10 Mayo Clinic 200 Southwest 1st Street Rochester MN 55905 Phone: 507-284-2691 Fax:507-284-5036 E-mail: carney.aidan@mayo.edu	Dr. Carney requests that tissue samples be sent to Dr. Stratakis at the NIH (see separate entry), his colleague and research partner. Dr. Carney continues to work to establish the clinical, pathological and behavioral characteristics of pediatric GIST, with emphasis on familial involvement and associated conditions.
Andrew K. Godwin, PhD Director, Clinical Molecular Genetics Laboratory (215-728-2756) Director, Biosample Repository Department of Medical Oncology Fox Chase Cancer Center Philadelphia, Pennsylvania contact:JoEllen Weaver (215-214-1633) JoEllen.Weaver@fccc.edu	GIST tumors are commonly associated with mutations in genes referred to as c-KIT and PDGFRalpha. This is much less common in pediatric GIST compared to adult GIST. Our laboratory is using molecular genetic approaches to study tumors without mutations to understand their biologic differences and to aid in identifying potential therapies to treat these tumor types.
NIH Pediatric & Wildtype GIST Clinic National Institutes of Health Bethesda, MD 20892 Constantine A. Stratakis MD, D(Med)S Chief, Section on Endocrinology and Genetics National Institute for Child Health & Human Development Phone:301-496-4686/496-6683 Fax: 301-402-0574/480-0378 E-mail: stratakc@mail.nih.gov and Su Young Kim, MD PhD Pediatric Oncology Branch National Cancer Institute E-mail: ncipediatricgist@mail.nih.gov phone 301-451-7018 fax 301-480-5906	Our goal is to identify genes and therapies for pediatric GIST, familial GIST, Carney Triad, and related conditions in the context of syndromes that are not due to the known KIT and PDGFRA mutations. Please e-mail Dr. Kim for instructions on tissue donations. You may download and print a medical release form by clicking below: Form for samples from prior surgery Form for samples from upcoming surgery