Frequently Asked Questions
What diseases are treated at the Pediatric
Oncology Branch?
The Pediatric Oncology Branch at the Clinical Center at NIH treats a wide
variety of pediatric malignancies including acute
leukemia, osteogenic sarcoma, rhabdomyosarcoma,
Ewing's sarcoma (and other bony or soft-tissue sarcomas), neuroblastoma
and brain tumors. Children with newly diagnosed
as well as recurrent malignancies are treated.
What types of treatment are offered?
There are over two dozen active treatment protocols.
Clinical protocols for newly diagnosed patients emphasize "state
of the art" treatment. In addition, treatment approaches for relapsed
patients include Phases I and II studies, which utilize new chemotherapeutic
agents and differentiation agents.
The NIH is a clinical research center. Will
the therapy be experimental?
A common misperception is that since the NIH is a clinical research center
all treatment administered to patients is "experimental." It
is important to know that new agents are not offered to patients for whom
there is a known effective therapy. The major advantage to patients treated
at the National Cancer Institute is that they are receiving the most up-to-date
treatment for their cancer. The testing of new
drugs is reserved solely for those patients whose disease is refractory
to standard treatment and who voluntarily express an interest in a new-agent
study. All new agents are screened and tested extensively before the Food
and Drug Administration grants approval for use in clinical trials.
Who is eligible?
Children, teenagers and young adults (less than 25 years old) with newly
diagnosed, recurrent malignancies or HIV disease are potential candidates
for referral to the Pediatric Oncology Branch.
How do I initiate a referral?
The Pediatric Oncology Branch is dedicated to providing the best medical
care possible to children, teenagers and young adults with cancer or HIV
disease.
To refer a patient, your physician should contact the Pediatric Oncology
Branch by calling 301-496-4256 or toll free at 877-624-4878. Ask
for the attending physician. The attending physician will discuss the
case with your physician, determine eligibility for treatment under a
clinical protocol and help arrange the referral. Once the patient has
been accepted for evaluation, a social worker from the Pediatric Oncology
Branch will contact the family and provide information regarding the study.
The social worker will provide the patient and the family with information
about travel and lodging. It will be important to forward any materials
that may be valuable in the evaluation process (i.e., a patient summary,
x-rays, scans, slides of pathological material, etc.). Frequently this
material can be brought by the patient. Any additional diagnostic procedures
that are necessary will be completed at the Clinical Center.
How is the referring physician's role in
patient care maintained?
We make every effort to keep your physician fully informed and involved
in the patient's care. The patient's Pediatric Oncology Branch physician
and primary nurse will initiate and maintain contact with the referring
physican's staff to coordinate the patient's treatment plan.
Does the Pediatric Oncology Branch provide
second opinions?
Yes, the Pediatric Oncology Branch offers a second opinion for physicians,
patients and families who are interested in this service. We can offer
you assistance in cases where a definitive diagnosis is difficult and
aid in developing an appropriate treatment plan.
What services does the Pediatric Oncology
Branch offer its patients?
Our health care team utilizes a multidisciplinary approach to provide
comprehensive care designed to meet the complex needs of the pediatric
oncology and HIV population. This multidisciplinary team consists of the
following disciplines: medicine, nursing, social work, nutrition, rehabilitation
medicine, neuropsychology, pharmacy, education, therapeutic recreation
and spiritual ministry.
What does the treatment cost?
There is no charge to patients for services rendered at the Clinical Center
as part of their participation in clinical protocols. Expenses for services
delivered at other facilities are not covered by NIH.
What about transportation to and from the
Clinical Center?
Patients must be willing to travel to the Clinical Center initially and
at periodic intervals. Patients are responsible for transportation costs
incurred during the initial evaluation period only. For patients living
more than 115 miles from the Clinical Center, subsequent travel will be
reimbursed. In special circumstances, other sources of support to cover
travel expenses may be available.
Are lodging accommodations available to
the patient and family?
Children's Inn at NIH, Inc., a nonprofit
organization, operates a family centered residence for chronically-ill
children and their families. The Inn is located on the campus of NIH,
within walking distance of the hospital. The Inn has 32,000 square feet
of space with 36 rooms for patients and their families. Rooms include
two double beds, full bath, tables and chairs and closet space. There
are also two fully stocked kitchens, playroom and a library. Reservations
at the Inn are arranged by Pediatric Oncology Branch social
workers. Housing is provided at no cost. Donations to the Inn are
gratefully accepted.
Last Updated:
July 26, 2006
NCI
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