Pediatric GIST

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.

 

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 your 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.

 

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.

 

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.

 

How do I register?
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.

 

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.

 

Transportation
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.

 

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 $75 per day for food and lodging at a local hotel. For patients under the age of 21, a $10 food voucher will be provided to the patient and a $10 food voucher will be provided to the parent daily. For patients age 21 to 24, a $10 food voucher will be provided daily to the patient.

 

The NIH Pediatric and Wildtype GIST Team

Ann Berger, MD, Pain Management Director
Barbara Santangini, LICSW, Clinical Social Worker
Baris Turkbey, MD, Radiologist
Constantine Stratakis, MD D(med)Sci, Pediatric Endocrinologist
Cyndi Donovan, RN, Research Nurse Specialist
Donna Bernstein, RN, Research Nurse Specialist
Donna Gregory, MD, Rehabilitation Medicine Specialist
Jennifer Graf, MS RD, Clinical Research Dietitian
Joan Sheeron, MA RN, Pediatric Clinic Nurse Manager
Lauren Long, RN, Research Nurse Specialist
Lee Helman, MD, Scientific Director for Clinical Research
Lori Wiener, PhD, Pediatric Psychosocial Specialist
Margarita Raygada, PhD MSC, Staff Genetic Counselor
Maria Tsokos, MD, Pediatric Pathologist
Maya Lodish, MD, Pediatric Endocrinology Fellow
Patrick Mansky, MD, Complementary and Integrative Medicine Consultant
Peter Choyke, MD, Radiologist
Sherri DePollar, PCC, Patient Care Coordinator
Su Young Kim, MD PhD, Pediatric Oncologist

 

We hope that you will join us in the effort to discover more about GIST by participating in the pediatric GIST clinic or by contributing to the pediatric GIST database.

For more information, please visit: www.pediatricgist.cancer.gov or contact ncipediatricgist@nih.mail.gov.