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Pediatric and Wildtype GIST Clinic Details from NIH

The investigators with primary responsibility for the NIH Pediatric GIST Clinic are Lee J. Helman, MD of the National Cancer Institute, Constantine A. Stratakis, MD D(Med)Sci of the National Institute of Child Health and Human Development. 

CLICK HERE to view a slide set provided by NIH about the purposes of the NIH Pediatric GIST Clinic, the NIH specialists involved, and the GIST expert physicians in private practice who will be assisting with the clinic.

Clinic days will be scheduled when experts from many disciplines will meet with patients (and parents) for examinations, review of treatment plans, and provision of any needed services that are not available to the patient through her own (or his own) local oncologist and hospital.  Patients will remain under the care of their own physicians, and NIH will communicate with the treating physicians.  By observing and learning from numerous pediatric GIST patients, NIH researchers will design treatment protocols for this disease and hope to gain insights to develop new treatment approaches.  Patients who participate will thereby help others as well as benefitting themselves.

Here is information provided directly by NIH:

1. The Pediatric and wildtype GIST Clinic at the NIH

We are pleased to announce the Pediatric and wildtype GIST clinic at the National Institutes of Health. The study of rare diseases is difficult. However, our belief is that a gathering of patients and expert healthcare providers will generate a wealth of information to discover the underlying mechanisms behind Pediatric and wildtype GIST.

2. 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.

3. 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 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.

4. 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 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 does 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.

5. What is the goal of the clinic?

The data that we obtain from these clinics will help us to design innovative treatment protocols. This protocol will have a biological component (to see which biochemical pathways are activated in the tumor), a molecular component (to determine which genes are disrupted), a radiologic component (to assess different imaging modalities) and a pharmacokinetic component (to see if drug levels in your body are appropriate). We will learn what is important to you, and then determine how best to implement that in the study. Your oncologist will remain in charge of your care. Our role will be to help provide any parts of your care that may not currently be available at your hospital.

6. When is the clinic?

The next clinic will take place on January 22nd and 23rd, 2009. Patients should arrive in the DC area on the 21st. Subsequent clinics will occur twice every year and specific dates will be announced.

7. How do I register?

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

8. Who will pay for this visit?

The Pediatric and wildtype GIST clinic is sponsored by the National Cancer Institute and the National Institute of Child Health & Human Development. Most expenses will be paid by the NCI and NICHD. Please read below for more details, especially for patients age 21 and older.

9. Transportation

Travel costs will be paid (as detailed below) once patients are accepted into the NIH protocol, but patients will be responsible for travel on the first visit.  However, if this presents a hardship, the patient or parent should contact the NIH social worker to discuss a possible exemption.

For patients under age 21, airfare for the patient and one parent is provided. For patients age 21 and over, airfare is provided for the patient only. Travel expenses are authorized for patients residing outside a 50 mile radius of the NIH campus in Bethesda, Maryland. For patients who reside less than 50 miles from the NIH, neither travel expenses nor food vouchers are provided. For patients who reside outside the United States, airfare will be provided from the closet point of entry within the United States. Free round trip shuttle service is available from the three local DC airports.

10. Lodging and meals

Patients under the age of 25 and one parent are eligible to stay free of charge at the Children’s Inn . If room is not available at the Children’s Inn, then the patient and parent will be housed at a local hotel at no charge. For patients age 25 and over, the patient will receive a reimbursement of $50 per day for food and lodging at a local hotel. For patients under the age of 21, a $8 food voucher will be provided to the patient and a $8 food voucher will be provided to the parent daily. For patients age 21 to 24, a $8 food voucher will be provided daily to the patient.

For questions, please e-mail 

You can learn more about the NIH and its facilities through the following links:




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