National Cancer Institute - Cancer.gov

GIST Clinic Application

The 2024 GIST Clinic will be held June 12-13, 2024.

Have You Attended Our Clinic in Previous Years?
Have you previously attended one of our GIST Clinics?
Contact Information
(mm/dd/yyyy)
(mm/dd/yyyy)
Is this a Cell?
Medical Information
Has tumor been tested for KIT or PDGFRA mutations?
If so, has it been found negative for both KIT and PDGFRA mutations?
Do you have paraganglioma?
Do you have pulmonary chondroma?
Do you have Neurofibromatosis-1?
What type(s) of scans?
(mm/dd/yyyy)
Tell us a little bit about you/your child's disease.
Travel Policy and Financial Assessment
Would you like a financial assessment?
It is the policy at the National Institutes of Health (NIH) that the Center for Cancer Research will provide support for the cost of a patient/family’s first visit and for local travel. Lodging for invited Pediatric patients will be arranged by us through the NIH Children’s Inn at no cost to you. Invited Adult patients must arrange their own lodging in the area. If you feel this could impose a hardship and prevent your participation, please request a Financial Assessment with one of our Social Workers. It is possible you may be granted financial assistance to allow you to participate in our program. If you request a financial assessment, it is imperative that you return any phone messages you receive from the NIH promptly.
About Our Wildtype GIST Clinic

The purpose of our Pediatric & Wildtype GIST Clinic is to support our research efforts in learning more about this rare disease. The clinic runs from Wednesday evening into Friday. Wednesday evening usually consists of an informational session by a keynote speaker and a social time.

During the clinic, patients will learn about various protocols, have blood work drawn, have a physical exam, and have an opportunity to meet with a team of oncologists and other care providers. A Genetics Counselor will also be available to discuss your genetic test results.

Additional consults or scans may be arranged if clinically indicated. You will receive a packet of information a few weeks prior to the clinic with a personalized schedule.

Check your areas of interest/need for the following consults (one-on-one) and workshops below

There are typically several group workshops available for patients to learn more about managing their disease, symptoms, and/or treatment side effects. Please rate your interest level (not interested = 1, very interested = 5) on each of the subjects listed below. Workshop offerings may vary.

1 2 3 4 5
1 2 3 4 5
Arrival and Departure

We require participants to arrive in the Washington, D.C. area by Wednesday afternoon. On occasion, patients request early arrival on Tuesday. If you plan to arrive early you may be scheduled to come to the clinic Wednesday morning.

Most participants leave Friday evening or Saturday morning. We are unable to guarantee lodging or transportation to area airports for Sunday departures.

Thank you for submitting your application and indicating your interest in our program here at the NIH.

Additional Medical Information
BJ Thomas, RN [C]
Clinical Research Nurse III
Rare Tumor Initiative
Building10-CRC, Room 1-3750
10 Center Drive
Bethesda, Maryland 20892

Once you send us this application, please have your outside medical team(s) send us the following records:

  1. A legible and thorough Clinical History note – including treatment history with dates, provided by one of your home physicians,
  2. Imaging exam reports and films concerning the GIST (either on CD or electronic submission) from:
    1. the time of diagnosis,
    2. the time around any procedures done,
    3. AND the most recent scans
  3. ALL GIST/paraganglioma/pheochromocytoma-related pathology reports
  4. ALL genetic testing/mutation reports

Please send Records to:

 

All applications will be reviewed by a team of specialists. Please keep in mind that we have limited space in each clinic. Invitations to attend the clinic will be determined on a case-by-case basis with the patient’s best interests in mind.

Photography and Survey
A photographer will be present during the clinic for social media/web purposes with the goal of raising awareness of available GIST resources and the clinic itself. By clicking “yes” you consent for us to contact you regarding a photography release form and more information about photo opportunities.
In addition, your feedback is very important to us. By selecting “yes” you consent to being contacted with a brief survey regarding your experience at the clinic following your visit.
CAPTCHA
This question is for testing whether or not you are a human visitor and to prevent automated spam submissions.