Frequently Asked Questions
Who is eligible to participate in a trial or study?
Where are you located?
I live far away. What about travel and hotels?
Where can I park?
Will you bill my health insurance?
How do you protect my confidentiality?
Do I need to be referred to you by my doctor?
How do you interact with my doctor?
What if I have an emergency?
Will you pay for all of my medical care?
What if I join a study and it isn't right for me?
So how does it work?
Do you have any general information about HIV?
Who is eligible to participate in a trial or study?
Anyone who meets the entry criteria and is willing to can participate. The entry criteria differ for each study or trial. Look at the list of trials to see if you think you fit the criteria. If you find one of interest, call the research nurse listed as the contact for the study. He or she will ask you questions on the phone to try to determine whether or not you fit the written criteria for the study.
Where are you located?
We are in the Warren G. Magnuson Clinical Center, which is the hospital and outpatient clinic center at the NIH. It is also called Building 10. There is a NIH stop on the Washington Metro (subway) called Medical Center. It's on the red line. Click here for a map. The NIH campus lies between Rockville Pike and Old Georgetown Road. For a general roadmap of the area, click here. For a map of the NIH campus, click here. For more information, including driving directions visit Visitor Information.
I live far away. What about travel and hotels?
Our goal is to provide fair, reasonable, and cost-efficient travel support for all of our patient volunteers. People who are interested in participating in a clinical trial pay for their initial trip to NIH.
Please see Visitor Information for more informaiton.
Where can I park?
There are two options for parking and both are free. If you choose to self-park, go to the Patient Parking garage (P1), which is on the west end of the building off Convent Drive. Parking attendants will be available to assist you. You’ll enter the new hospital through a new lobby on the lower (B1) level. Stop by the Hospitality desk to validate your parking ticket. The South Elevators serve the parking garages. If you’d prefer to use the valet parking service for patients and visitors, drive to the Clinical Center’s new main entrance on Center Drive. Valet parking is available Monday through Friday, 7 am -10 pm (excluding federal holidays). When you arrive, have your valet claim ticket validated at the Hospitality desk.
Will you bill my health insurance?
No.
How do you protect my confidentiality?
The Federal Privacy Act protects the confidentiality of your NIH medical records. The Act allows release of some information from your medical record without your permission, for example, if it is required by the Food and Drug Administration (FDA), members of Congress, law enforcement officials, or other authorized people. The Clinical Center complies with Maryland State laws for reporting certain infectious diseases and conditions. If you have a diagnosis of AIDS or if you have symptoms of HIV infection, your doctor is responsible for reporting this to the health department. If you have any questions about HIV testing or this policy, you can discuss them with the research team or the Clinical Center HIV counselor. For more information, click here. When results of a NIH research study are reported in medical journals or at scientific meetings, the people who take part are not named or identified. Some studies have a pharmaceutical company sponsor, and in this case data about you but without your name attached might be submitted to the pharmaceutical company.
Do I need to be referred to you by my doctor?
No. You may refer yourself for a study. We suggest that you discuss a study with your doctor for his or her advice about study participation.
How do you interact with my doctor?
All patients must have their own physician or medical care. We do not provide primary care (general medical care), but we provide care only as it relates to a particular study. We cannot provide long-term care. We will ask you to identify your care provider when you come to clinic and to give us your permission to contact this care provider. For anything more than a brief study of no medical consequences, we send a letter to your physician that explains the study. We routinely send information to your physician (results of blood tests for example), and we would not ask your permission each time to talk to your doctor. You may change doctors at any time by providing us with the new person to contact and with permission to contact him or her. We encourage you not to have all blood tests repeated at your physician's office because we are concerned about the total amount of blood that could be lost to you by duplicating tests.
What if I have an emergency?
The NIH Clinical Center has no emergency room, but we do have people available 24-hours a day to talk to study participants in the case of an emergency that might be related to study participation. If it is an immediate emergency, you would need to go to the closest emergency room. For illness unrelated to the study, you would need to seek care from your doctor or clinic as usual.
Will you pay for all of my medical care?
No. We will not provide general medical care. There is no charge for clinic visits or for hospital stays at the NIH Clinical Center, but only study-related medical issues or emergencies will be handled. Medications that come from the NIH are obtained from our pharmacy without charge. Medications for diseases or conditions that are not related to the study will not be provided except for short-term amounts in an emergency. NIH will not pay for services delivered at other facilities.
What if I join a study and it isn't right for me?
You may choose not to take part, or you may withdraw from the study at any time. In either case, you will not lose any benefits to which you are otherwise entitled. However, to receive care at NIH, you must be taking part in a study or be under evaluation for study participation.
So how does it work?
You find a study of interest to you, and you call the study coordinator. The study coordinator asks questions to determine if you are likely to be eligible for the study. If so, he or she gives you information about the study and procedures and schedules a screening visit to our clinic. At this first visit, usually the study coordinator sees you; blood tests are taken, and you and the study coordinator again discuss the study. You should read the consent form before coming to clinic, because it contains information that you need to make an informed decision about whether or not participation is right for you. The consent form will also be discussed with you and explained to you. It is often helpful for you to keep a list of questions that come to your mind or that are raised by family, friends or your doctor, so these can be brought to clinic and addressed. For the next visit (sometimes the next day), you see a clinic physician for a history and physical, and you see the attending physician to discuss the pros and cons of study participation and to address any medical issues that pertain to you in particular. Finally, after you've had the time you need to think about the study and to ask questions, if you are interested, you sign the study consent document, and you have begun your study participation. After that, visits are set according to the study. Study procedures are laid out in a document called a protocol, which is written before anyone joins the study. Sometimes study requirements change, but they are to be applied equally to all study participants unless someone has special medical needs.
Do you have any general information on HIV?
You can access some information we have developed for our clinic patients here: "Tests for HIV Infection," Laboratory Test Information Packet", What is a Latent Virus?", Drug Information Sheets, A Do-it-Yourself Guide to Preventing Exposure to Infectious Agents, Guidelines for the Prevention of Opportunistic Infections, and Information about Cholesterol and Triglycerides. (For more information on cholesterol and triglycerides, please go to: http://www.nhlbi.nih.gov/chd.)
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