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Tobacco Free Campus
Effective October 1, 2008, the use of all tobacco products (including cigarettes, cigars, pipes, smokeless tobacco, or other tobacco products) is prohibited at all times: In all buildings; on all outside property or grounds, including parking areas; in government vehicles. More information about our Tobacco-free campus is available online.
Planning Your Visit
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Where to stay
We are able to accommodate most patients at the Safra Family Lodge or the Children's Inn, which are both provided free of charge to NIH patients and are located on the NIH campus. Check-in time for the Family Lodge or the Children's Inn is 3:00 PM. Patients must check out of the Children's Inn by 10:00 AM or the Family Lodge by 11:00 AM on their last day of scans.
Staying at the Family Lodge is not a guarantee and is scheduled by priority; one may be bumped from the Lodge at the last minute. You must call the Safra Family Lodge (301-496-6500) 24 hours prior to your arrive to confirm your reservation using the confirmation number on the upper right corner of your schedule.
We will make our best efforts to accommodate you at the Family Lodge or Children's Inn, but accommodations are not guaranteed. If you choose not to stay at the Family Lodge or the Children's Inn or need alternate accommodations, please refer to the list of hotels in the area. Our protocol will reimburse you for the cost of your hotel room (up to $189/night).
Getting to the NIH
There are several options for getting to the NIH. Many people choose to drive to the NIH. Please see: Driving to the NIH for more information.
You may also wish to fly to the area. There are three airports in the greater Washington area: Ronald Reagan National Airport, Washington-Dulles International Airport, and Baltimore-Washington International Airport. To get to the NIH from the airport, you can either rent a car or use alternate transportation. Please click on the appropriate link for more information on these options.
There are also other options, such as trains or buses. For more information, please see: Other Transportation Options.
Accessing Campus and Getting to the Clinical Research Center
All visitors must go through security before entering the NIH campus. If you will be driving to campus, please see Visiting Campus by Car for information on visitor vehicle security and parking. If you will not be driving to campus, please see Visitor Security Information for information on visitor security and campus shuttles.
In addition, please see:
Navigating the CRC
The Clinical Research Center is a large facility. Please see the Clinical Center Map (PDF - 535KB) for a layout of the CRC.
Getting to Admissions
New patients who have not been through the admissions process will need to first go to admissions upon arrival to the CRC. If you drove to the NIH and are coming in from the garage, take the South Elevators to the first floor. Exit the elevators and take a left. Take a right at the main corridor (do not go through the sliding glass doors). The Admissions Office will be the first area on your left.
If you took a shuttle or walked to the CRC and entered through the main lobby, continue through the lobby. Stay to the right of the tables in the café area. The Admissions Office will be on your right just after the Central Elevators.
Getting to 5 South West Day Hospital
To get to 5 South West Day Hospital (5SWDH), take the Central Elevators (just outside of Admissions) to the 5th floor. Exit the elevators and turn away from the glass windows overlooking the lobby. With your back to the glass windows, go to the right, toward signs for the West Corridor and 5 SW Inpatient Unit. Take a left into the main hallway, and 5SWDH will be ahead on your right – there should be a sign from the ceiling to direct you.
Getting to phlebotomy, nuclear medicine, or radiology
To get to phlebotomy, nuclear medicine, or radiology, follow the main corridor outside of the Admissions Office to the sliding glass doors (away from the main lobby). Phlebotomy will be in front of you once you pass through the sliding glass doors, and nuclear medicine and radiology are down the hallway to your right.
Getting to OP9 Clinic
To get to OP9 clinic, take the South Elevators to the 9th floor. Upon exiting the elevator, turn toward the large glass windows. When facing the windows, take a left. OP9 Clinic is to the left.
Places to Eat
There are two cafeterias in the Clinical Research Center (located on the B1 level and the second floor), as well as an Au Bon Pain café in the main lobby.
To get to the B1 cafeteria, take the hallway to the left of phlebotomy (toward Masur Auditorium). Take the main elevators at the end of the hallway to the B1 level. You should be able to see signs for the cafeteria when you exit the elevators.
To get to the second floor cafeteria, take the South Elevators (near the sliding glass doors by Admissions) to the second floor. Exit the elevator and turn toward the main lobby. With your back the South Elevators, go to the right and take a right into the main corridor (you should see an area with a tiled floor and a small sitting area ahead of you). The entrance to the cafeteria will be ahead of you to the left.
For places to eat off-campus, please refer to the list of restaurants.
What to Expect
At the National Institutes of Health, we offer a very comprehensive team approach to our patients' evaluation. We have many disciplines on our team, including surgery, oncology, interventional radiology, and radiation oncology.
Patients will have a concise evaluation, typically starting on Monday morning at 7:00 AM. The evaluation is supervised by our chief and principal investigator, Dr. Karel Pacak.
Patient evaluations are done as an outpatient. We admit patients into the CRC (Clinical Research Center) for surgery and treatments.
For patients with known or suspected pheochromocytoma/paraganglioma
If you are known or suspected to have a pheochromocytoma or paraganglioma, plan to spend approximately one week to ten days at the NIH. Typically, new patients arrive on Sunday and go to the Admissions Office. It is extremely important that new patients go through the admissions process before any scheduled labs or scans. Admissions can take up to an hour, so we recommend going to the Admissions Office the day before any scheduled labs. In some cases, patients may have gone through Admissions off-site. If this is the case, you do not need to go to Admissions upon arrival. Please ask the team member scheduling you if you have any questions about whether you need to go through Admissions.
Patients are usually scheduled for labs on Monday morning at 7:00 AM at 5 South West Day Hospital. On Tuesday mornings, patients are typically scheduled for an appointment at our endocrine clinic. Depending on disease status and tumor location, patients may also be scheduled for other clinic appointments during the week. In addition to biochemical tests and clinical appointments, patients with a known or suspected pheo/para will be scheduled for several imaging scans throughout the week. For more information about biochemical and imaging studies, please refer to our Diagnostic Tests page.
For patients who are undergoing screening for pheochromocytoma/paraganglioma
If you are a patient who has a history of pheo/para or has a known genetic predisposition to pheo/para who is undergoing screening, plan to spend one to two days at the NIH. If you are a new patient, it is extremely important that you go to the Admissions Office before any scheduled labs or imaging studies. Since labs are often scheduled for 7:00 AM and the admissions process may take up to an hour, it is recommended that you go through Admissions the day before any scheduled studies. Screening patients will be scheduled for labs at 5 South West Day Hospital. You may also be scheduled for a history and physical with a member of our team. Screening patients are typically also scheduled for an imaging study, usually a whole body CT scan. Please refer to our Diagnostic Tests page for more information about the procedures.
For surgical patients
Surgery patients are typically admitted as an inpatient 1-3 days before surgery. You will need to go to Admissions to be registered as an inpatient, at the date and time listed on your schedule. All surgical patients must have a chest X-ray, EKG, and pre-anesthesia consult before surgery. No appointments are needed for the chest X-ray or EKG. Depending on the procedure, you will typically be at the NIH for several days to a week after surgery before discharge, and may require up to several weeks after discharge before returning to work. For more information about preparing for surgery, please see the Preparing for Surgery page.
For patients who are undergoing genetic testing
If you are a patient who has a family history of pheo/para-related genetic mutations, plan to spend a morning at the NIH. You will need to go to the Admissions Office before getting your blood drawn. The Admissions process can take up to an hour, so please plan accordingly. After you have gone through Admissions, you will need to go to phlebotomy to have your blood drawn for the genetic testing.
Important Information Before You Come
Before you come to the NIH for evaluation, be sure to look at the required documents and medication, food and exercise restrictions. We also encourage you to use this website to learn more about pheochromocytoma/paraganglioma, the diagnostic tests we perform, and the treatment options.
Checklist For Your Visit
The following checklist will help you ensure that you have completed all the necessary steps and will help you prepare for your visit to the NIH. Please see a printable version of this checklist (Word 29KB).
Before you arrive at the NIH, be sure you have:
- Contacted your physician(s) to have sent to Karen Adams (see Required Documents for more information):
- referral letter
- medical records relating to your pheo/para (if applicable)
- biochemical testing results (if applicable)
- imaging testing results, including CDs of images (if applicable)
- surgical pathology reports and pathology slides (if applicable)
- Sent any genetic testing results (if applicable) to Tory Martucci (see Required Documents for more information)
- Written a personal essay and sent it to Tory Martucci, if applicable (see Required Documents for more information)
- Filled out the appropriate questionnaires and notified Tory Martucci of their completion (see Required Documents for more information)
- Stopped taking any medications, if necessary (see Medication, Food and Exercise Restrictions for more information)
- Confirmed reservations for Safra Family Lodge (301-496-6500) 24 hours before arrival (if applicable) (see Safra Family Lodge for more information)
Things to bring with you to the NIH
- Any personal medications you need (we do not supply medications)
- Driver's license, passport, or other government-issued photo ID (for security)
- A copy of your schedule
When you arrive at the NIH
- If you are a new patient, make sure you go to Admissions before any scheduled testing, preferably the day before. (Important note: If you have completed off-site admissions forms, you do not need to complete this step. If you are unsure whether you need to go through admissions, please ask the team member who is scheduling you.)
- Review your schedule and know when your appointments are. Please be on time for all scheduled labs and appointments.
Before you leave NIH
- Make sure you have signed a consent form, and if applicable, a genetic testing form (if you have not signed these, please contact Karen Adams or Tory Martucci)
- If you want your medical records released to your physician, you must sign a release form. This can be done before you leave the NIH, or by contacting Medical Records after you leave (see below for more information).
Releasing Medical Records
If you wish to have your medical records released to you or your physician, please fill out the "Authorization for the Release of Medical Information" form. This form is unavailable online and can only be received by calling the Medical Record Department.
It is your responsibility to fill this form out in order to have results released to you or your physician. Please call the Medical Record Department if you have any further questions.
The medical record department will not automatically send medical records to your physician if you are an outpatient. Please call them to update any recent information or new visits to the NIH.
MEDICAL RECORD DEPARTMENT
10 Center Drive, Bldg 10 RM-1N205
Bethesda, MD 20892
Toll Free: 1-888-790-2133
Fax: 301-480-9982NIH 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: