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Protocol Introduction to Pheochromocytoma

Pediatric and Reproductive Endocrinology Branch National Institute of Child Health and Human Development National Institutes of Health

We are inviting you to participate in this study because we believe that you may have pheochromocytoma, a tumor located in the adrenal gland or outside the adrenal gland. We will do our best to properly diagnose you and have a recommendation of a treatment plan for you and your physician. Furthermore, we would like to let you know that:

  • If surgery, is recommended, this will be done at NIH
  • If chemotherapy is recommended you will be referred to an oncologist, where you live
  • If external radiation treatment is recommended you will be referred to a radiation oncologist, where you live
  • 131-I MIBG treatment is recommended you will be referred to various US medical center's

After treatment/discharge at NIH, you will return to the care of your referring physician where your care will continue, including medications. If your referring physician feels that you need to be seen by NIH, for a follow up visit, your referring physician must contact us and refer you back to us. On individual basis you may be called by our team directly to provide you with follow up plan and visits here at NIH. PLEASE DO NOT CALL THE NURSING UNITS IN THE RESEARCH CENTER, LOOKING FOR THE ENDOCRINE TEAM.

Within a short period of time, you will receive your schedule. Please familiarize yourself with this schedule, as well as the layout of the CRC (Clinical Research Center.) We recommend coming to the NIH, one day before your scheduled appointment to go through the admission process and a self-guided tour of the CRC.

For your evaluation, you will have a series of blood tests and imaging studies. Upon your admission as well as after your evaluation has been completed, you will meet with Karel Pacak, M.D., Ph.D., D.Sc., to review your results. PLEASE REMEMBER, these are only preliminary results, it takes at least 2-3 weeks until all results are completed and sent to us for final evaluation.

Imaging studies and appointment are limited at the CRC; therefore, if an appointment is missed, it cannot be rescheduled and the patient may be removed from the protocol.

Please note referring physicians' responsibilities:

  • Referral letter addressed to Dr. Karel Pacak
  • Providing a copy of all biochemical and imaging studies (on a CD) including radiology reports, and laboratory data (blood tests needs to be done within 3 months of appointment)
  • A record of any treatments you may have had, i.e., chemotherapy, radiation, 131-I MIBG treatment, surgery
  • Pathology slides and reports and operative reports
  • Genetic test results, if performed

Patient's responsibilities - PLEASE READ THOROUGHLY AND UNDERSTAND BEFORE BEING ADMITTED INTO OUR PROTOCOL:

  • Do not consume any: caffeinated or decaffeinated beverages including coffee, tea, sodas, chocolate or alcohol for at least 24 hours prior to your NIH admission (these products will greatly affect the outcome of your biochemical testing and will dismiss you from the protocol.)
  • Do not smoke for at least 24 hours prior to your arrival to NIH (smoking will greatly affect the outcome of your biochemical testing and will dismiss you from the protocol.)
  • Do not take acetaminophen (Tylenol) or any acetaminophen containing products for at least 5 days prior to admission. Ibuprofen products are safe to take.
  • Labetolol must be stopped at least 4 weeks before your admission to NIH if you are having the 123 I MIBG scan. You need to talk with your physician before stopping any medications. LABETOLOL CANNOT BE TAKEN WITH THE 123 I MIBG SCAN; YOU WILL HAVE A NEGATIVE READING!
  • Please note: The National Institutes of Health is a Clinical Research Center, does not offer emergency care services. If you should need emergency care, while being seen at the NIH, you will need to seek medical attention, at the closest emergency room. The closest hospital to the NIH is Suburban Hospital (located, across the street, on Old Georgetown Road.) If a patient is taken to the hospital, the NIH is not responsible for any costs/charges incurred.
  • Additional Medications we recommend stopping before coming to the NIH for testing:
    • Benzodiazepines
    • MAO Inhibitors
    • Tricyclic Antidepressants
    The aforementioned medications may give us false results, on your biochemical tests. Please see your physician BEFORE stopping any medications!
  • 2 Authorizations for the Release of Medical Information. You will be faxed two medical release forms. The first form is already filled out with Dr. Pacak's name, for our records in case we need to forward information for you to a physician/referral. The second form is for you to have your medical records sent to your personal physicians. If you have more than one physician, just copy this form. Bring or fax this form to the Medicolegal Office on the first floor of the NIH. This is very important. If you do not fill out this form, your records WILL NOT BE SENT TO ANYONE.
  • If you are claustrophobic (don't like small, confined areas) please let us know as soon as possible so we can arrange to pre-medicate you for your scans.
  • This is a voluntary study. You can withdraw from the study, at any time.
  • Surgery- visiting hours on the unit. Please respect the visiting hours and privacy of other patient's (especially your loved one's roommate.) Visiting hours are: 11 AM - 8 PM everyday. The only exception, if a patient is having surgery.
  • Fasting. Please understand, you will be required to fast (not eat) for certain imaging and biochemical testing. If you cannot fast, you cannot be part of this study.
  • Foley Catheters. If you have a catheter of any kind, please let us know BEFORE your hospital admission.
  • Mental health problems. If you have had ANY psychiatric problems, you must let us know.
  • Financial Issues: PLEASE READ AND UNDERSTAND
    • The NIH will not be responsible for travel/transportation reimbursement to and from the NIH facility.
    • The NIH will not be responsible for lodging, meals and transportation reimbursement as an outpatient at the NIH.
    • The patient incurs all expenses when coming to the NIH; we will cover the cost of the medical treatment, i.e., diagnostic scans and biochemical tests and inpatient stay.
    • Any questions should be directed to me, Karen T. Adams. Please do not contact Social Services, the Voucher office or The Family Lodge they will only defer you back to me.
    • The Family Lodge is for housing the family members of critically/gravely ill patient's only, who are hospitalized.