GIST Clinic Application 2020

Clinic date: TBD 2020

Please note that the application period for the 2019 clinic is now closed. This Application is the first step in a multi-step process for being considered for participation in our upcoming Pediatric and wild-type GIST clinic. Please review all 3 pages and complete all questions in full.

Applications for the July 2017 GIST Clinic have now closed.
Please check back again in January 2018.
If you are interested in our clinical trials, contact us at ncipediatricgist@mail.nih.gov

Clinic Date: July 5-7, 2017

Application Deadline: March 10, 2017

This application is the first step in a multi-step process for being considered for participation in our upcoming Pediatric & Wildtype GIST Clinic. Please review the entire form and complete all questions in full.

Have You Attended Our Clinic in Previous Years?
Contact Information
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Medical Information
Tell us a little bit about you/your child's disease.
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Travel Policy and Financial Assessment
It is the policy at the National Institutes of Health (NIH) that for a first-time visit, travel is at the patient’s/family’s cost. 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.

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.

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Coping with Anxiety - Workshop for Adults/Workshop for Youth *
GIST Patient and Family Meeting (with Advocate Group Representatives) *
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Group Meeting with Team Physician/Update on GIST Research *
Healthy Nutrition Tips *
Alternative and Complementary Medicine *
Exercise and Maintaining a Healthy Lifestyle *
Relaxation and Meditation Techniques *
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.