Applications for the GIST Clinic on June 11 - 12, 2025 are open. Have You Attended Our Clinic in Previous Years? Have you previously attended one of our GIST Clinics? Yes No If yes, please tell us your current health status or concerns Contact Information Date of Application (mm/dd/yyyy) Name of person completing this application Relationship to patient (patient, parent, other) explain Patient Name Patient Date of Birth (mm/dd/yyyy) Mailing Address Phone Number Is this a Cell? Yes No Other Phone Number (if applicable) E-mail If the patient is under age 18, list parent/guardian name(s) Parent/Guardian address/contact information, if different from above Medical Information Date of Diagnosis Location of Tumor(s) Has tumor been tested for KIT or PDGFRA mutations? Yes No Pending If so, has it been found negative for both KIT and PDGFRA mutations? Yes No Unknown Do you have paraganglioma? Yes No Unknown Do you have pulmonary chondroma? Yes No Unknown Do you have any other tumors (list)? Do you have Neurofibromatosis-1? Yes No Unknown Current treatment for GIST (if any)? Home Physician"s name, facility affiliation, and contact information How often do you have scans done? What type(s) of scans? CT MRI PET Other If you selected other, please specify Most recent or next scan date (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? Yes No 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 About GIST Clinic Description 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 Nutrition (for GIST complications) Dermatology Pain Management Psychosocial Consult Social Worker (assistance in understanding how to access services, one-on-one) Other If you selected other, please specify Group Workshops info block 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. Thursday Afternoon Questions 1 2 3 4 5 Coping with Anxiety - Workshop for Adults/Workshop for Youth 1 2 3 4 5 GIST Patient and Family Meeting (with Advocate Group Representatives) 1 2 3 4 5 Friday Questions 1 2 3 4 5 Group Meeting with Team Physician/Update on GIST Research 1 2 3 4 5 Healthy Nutrition Tips 1 2 3 4 5 Alternative and Complementary Medicine 1 2 3 4 5 Exercise and Maintaining a Healthy Lifestyle 1 2 3 4 5 Relaxation and Meditation Techniques 1 2 3 4 5 Arrival and Departure Arrival and Departure info block 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 Additional Medical Information info block 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: A legible and thorough Clinical History note – including treatment history with dates, provided by one of your home physicians, Imaging exam reports and films concerning the GIST (either on CD or electronic submission) from: the time of diagnosis, the time around any procedures done, AND the most recent scans ALL GIST/paraganglioma/pheochromocytoma-related pathology reports 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 photography yes no Yes No 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. survey yes no Yes No 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.
