The National Institutes of Health (NIH), a part of the U.S. Department of Health and Human Services, is the primary Federal agency for conducting and supporting medical research. Helping to lead the way toward important medical discoveries that improve people's health and save lives, NIH scientists investigate ways to prevent disease as well as the causes, treatments, and even cures for common and rare diseases. The National Institutes of Health is made up of 27 different components called Institutes and Centers. Each has its own specific research agenda.
NIH's mission is to seek fundamental knowledge about the nature and behavior of living systems and the application of that knowledge to enhance health, lengthen life, and reduce the burdens of illness and disability.
NIH is not a regular medical center and in order to be evaluated at NIH, each person must be enrolled in a research protocol.
General Visit Questions/Preparing for Your Visit
If I think I have a pheochromocytoma, how do I apply to your protocol?
If you would like to be considered for our protocol, either you or your provider should contact us. The easiest way to do this is through email:
In the email, include your name and contact information. Tell us why you are interested in being enrolled in the protocol. We will contact you for more information.
How long will I be at the NIH?
This depends on individual. At the initial visit, expect to stay about a week for the comprehensive evaluation and consultation with Dr. Pacak. The visit may be shorter but will depend on the availability of scans.
Will I be an inpatient or outpatient?
When you come to the NIH for evaluation, you will be an outpatient. Only patients undergoing surgery or treatment will be admitted as inpatients.
What should I wear when I come to the NIH for evaluation?
Dress comfortably. When being scanned, you cannot wear any metal or jewelry of any kind.
Does NIH cover travel or lodging expenses?
Although some protocols do cover travel to the NIH for evaluation, our pheochromocytoma/paraganglioma protocol DOES NOT cover travel. The protocol does cover lodging during your stay at NIH.
If I am staying as an outpatient, do I make reservations at a hotel?
We will arrange your lodging while at NIH. We try our best to accommodate you in the Safra Family Lodge, which is located across from the Clinical Research Center/Bldg 10 or at the Children's Inn if the patient is a child. If this is not possible, we arranged lodging at a nearby hotel with regular shuttle service to the NIH campus. Each room can accommodate 4 people.
Does NIH cover food expenses?
Although our protocol does not cover expenses for food, there are 2 cafeterias and coffee shops located in the Clinical Center/Bldg 10; please see the map of the CRC for location. There are also multiple restaurants and grocery stores nearby off-campus in the Bethesda area
Are you permitted to leave the lodge on the NIH campus if you stay there?
There are no restrictions. You are allowed to leave the lodge at any time.
How far is the NIH from the nearest airport?
There are three airports in the Washington, D.C. area: Baltimore-Washington International, Reagan National, and Dulles International. All three are about 30-45 minutes from the NIH (although these times can vary with traffic). There are NIH shuttles to all three airports daily except Saturday.
Does a patient need to rent a car during their stay at NIH?
Renting a car isn't necessary since all the tests and scans are done in the Clinical Research Center, located on the NIH campus. NIH also provides on campus shuttles between buildings and there is a metro stop right on campus (Medical Center on the Red Line) if you would like to go off-campus during your stay.
Does NIH cover the costs of the tests and scans done?
Yes, NIH will cover the costs of any tests and imaging work done for this protocol.
Will all the tests listed under Diagnostic Tests be conducted on each patient?
Not all tests may not necessarily be performed on each patient. The tests performed vary by patient and by disease status.
Is testing done every day or at specific times?
Prior to your arrival, each patient will receive a schedule by email that will display the times of each scan and/or test for each day. Each patient's schedule varies according to his or her previous scans/tests, history, background and diagnosis.
When will I know the results?
Most of the results will be available during the consultation with Dr Pacak. Others will be available in 7-10 days. You can access most of your results on the patient portal if you choose to register for access. You will receive a clinical note with the summary of your testing and recommendations within 1-2 weeks after completion of the evaluation.
For more information about the NIH campus, arrivals and shuttles, see the following links: