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1. The Pediatric and wildtype GIST Clinic at the NIH
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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.
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2. Am I eligible?
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You are eligible to attend the clinic if you are a child or a young adult with GIST, or if you have wildtype GIST. |
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3. How will I benefit by participating?
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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.
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4. Will this clinic benefit others?
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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.
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5. What is the goal of the clinic?
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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.
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6. When is the clinic?
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The NIH GIST Clinic will occur usually in June, once every year. Please contact us for the specific dates.
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7. How do I register?
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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.
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8. Who will pay for this visit?
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The Pediatric and wildtype GIST clinic is sponsored by the National Cancer
Institute and the National Institute of Child Health & Human Development. Some expenses will be paid by the NCI
and NICHD. Please read below for
more details, especially for patients age 21 and older.
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9. Transportation
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Normally patients are responsible for their travel to the NIH for the first GIST clinic they attend, unless special considerations need
to be made.
For all visits after the initial one the following guidelines apply. For patients 21 and under, airfare for the patient and one guardian
is provided. For patients over 21, airfare is provided for the patient only. Travel expenses are only authorized for patients residing outside
a 50mile 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 closest point of entry within
the United States. Free round trip shuttle service is available from the three local Washington DC airports.
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10. Lodging and meals
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Patients age 25 and under 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 guests will be housed at a local hotel at no charge.
Patients age 26 and over, will receive a reimbursement of $50 per night for lodging at a local hotel.
All patients will receive $8 per night for food. For patients under the age of 21 an additional $8 will be provided to the guardian daily.
These amounts may be slightly different from year to year.
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The NIH Pediatric and Wildtype GIST Team |
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Fernanda Arnaldez, MD |
Pediatric Oncologist |
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Ann Berger, MD |
Pain Management Director |
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Sosipatros Boikos, MD |
Medical Oncology Fellow |
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Peter Choyke, MD |
Radiologist |
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Sherri DePollar, PCC |
Patient Care Coordinator |
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Joan Galil, LCSW |
Clinical Social Worker |
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Donna Gregory, CTRS MBA |
Rehabilitation Medicine Specialist |
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Lee Helman, MD |
Medical Oncologist, Scientific Director for Clinical Research at NCI |
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Maya Lodish, MD |
Pediatric Endocrinologist |
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Lauren Long, RN |
Research Nurse Specialist |
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Terri Moore, PCC |
Patient Care Coordinator |
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Markku Miettinen, MD
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Pathologist, Head of Surgical Pathology Section at NCI |
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Margarita Raygada, PhD MSC |
Staff Genetic Counselor |
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Joan Sheeron, MA RN |
Pediatric Clinic Nurse Manager |
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Constantine Stratakis, MD D(med)Sci |
Pediatric Endocrinologist, Scientific Director at NICHD |
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Lori Wiener, PhD
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Pediatric Psychosocial Specialist |
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12. Maps of the NIH
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We hope that you will join us in the effort to discover more about GIST by
participating in the Pediatric and wildtype GIST clinic at the National Institutes of Health.
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