Frequently Asked Questions (FAQ)


1. Am I eligible?

You are eligible to attend the clinic if you are a child or a young adult with GIST, or if you have wildtype GIST.

2. How will I benefit by participating?

You will be seen by some of the national leaders in the field of GIST, comprised of geneticists, medical oncologists, pediatric oncologists and pediatric surgeons. In addition, we have assembled a team of healthcare providers to help manage some of the problems associated with GIST. This includes physicians who specialize in pain management, dieticians and psychosocial experts. Pathologists and radiologists will also participate. We would like to stress that it is not our intention to take over your care from your oncologist. However, the number of experts from different fields who are thinking about the specifics of your medical history may allow us to make recommendations to your oncologist and surgeon, with the goal of improving your health. Additionally, you will have the chance to interact with other patients and families.

3. Will this clinic benefit others?

The contribution that your visit to this clinic will make to the care of others cannot be emphasized enough. Our philosophy is that the opportunity to evaluate every patient with Pediatric or wildtype GIST will help the medical community understand the mechanisms that underlie this disorder. We will have the opportunity to compile details of your history, response to prior treatments, radiographic assessments and molecular studies. The data for a single patient may not provide much insight. However, when combined with that of all other patients, the information will generate many leads to help us better understand the genetic and clinical elements of Pediatric and wildtype GIST.

4. What is the goal of the clinic?

The data that we obtain from these clinics will help us to design innovative treatment protocols. These protocols may have a biological component (to see which biochemical pathways are activated in the tumor), a molecular component (to determine which genes are disrupted), a radiographic component (to assess different imaging modalities) and a pharmacokinetic component (to see if drug levels in your body are appropriate). Your oncologist will remain in charge of your care. Our role will be to help provide any elements of your care that may not currently be available at your hospital.

5. When is the clinic?

The NIH GIST Clinic will usually occur once per year in June or July. Please contact us for the specific dates.

6. How do I register?

Please send an e-mail to ncipediatricgist@mail.nih.gov. State your wish to attend subsequent clinics. A return e-mail will be sent to you shortly thereafter with further instructions.

7. Who will pay for this visit?

The Pediatric and Wildtype GIST Clinic is sponsored by the National Cancer Institute (NCI) and the National Institute of Child Health and Human Development (NICHD). Some expenses will be paid by the NCI and NICHD. Please see Travel Information for more details, especially for patients age 21 and older.