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National Institutes of Health (NIH) Clinical Center, Bethesda, MD
The NIH Clinical Center in Bethesda, MD, is the research hospital for the National Institutes of Health, and is made up of the Warren Grant Magnuson Clinical Center and the Mark G. Hatfield Clinical Research Center. It is the Federal Government's principal agency for biomedical research. The NIH is currently investigating several protocols for mesothelioma.
Unlike other hospitals that provide standard diagnostic and treatment services, admission to the Clinical Center is selective, and patients are chosen based on the fact that they have an illness that is under investigation by one or more of the Institutes. In order to enroll in a clinical trial, participants must meet specific eligibility requirements, and detailed medical information must be provided by the patient and/or their physician. The decision as to whether or not a patient is ultimately allowed to enroll in a trial is at the discretion of a principal trial investigator at a screening visit.
Although there is no charge for medical care received at the NIH Clinical Center, participants are responsible for their own travel costs to the initial screening visit. In most cases, if the patient is selected to enroll in a trial, the National Cancer Institute will pay transportation costs for all subsequent trial-related visits, and will provide a small per diem for food and lodging if treatment is given on an outpatient basis. Maintaining current health insurance for medical care not related to the trial is of importance.
Mesothelioma patients or their health care providers may call the Clinical Trials Referral Office at 1-888-624-1937, Monday - Friday, 9:00 - 5:00 Eastern time, to determine whether a clinical trial is available. The staff will conduct a trial search and will evaluate preliminary eligibility based on medical information provided by the patient/health care provider. The staff will then either forward the prospective participant's information to research teams conducting the appropriate trials, or will provide contact information for the appropriate investigators. If the patient is eligible for a trial, a member of the investigative team will then contact the patient/health care provider to discuss further procedures.
Patients selected for a mesothelioma trial may be asked to schedule an appointment at the NIH to learn more about the study, and possibly to undergo additional medical testing. It is imperative that patients have a complete understanding of the trial, including details of the treatment itself, tests involved and potential risks and benefits. If, after discussing all aspects of the trial, the patient chooses to enroll, they will receive an "informed consent" form to read and sign. This document contains a trial summary and explains the rights of the participant. A copy of the signed document should be retained by the participant.
Every effort is made to promote patient welfare, and to provide the best medical care possible; all trial participants are protected under the Patient's Bill of Rights. Each trial is reviewed for risks and merits by the National Cancer Institute Institutional Review Board (IRB) to assure that the trial is well designed, legal and ethical. No treatment is given that involves undue risk, and the participant is free to decline participation in any aspect of the trial. If the trial encounters unanticipated problems, it will be discontinued by the investigative team.
Patient care is coordinated between the National Cancer Institute and the patient's health care provider. This process begins upon referral, at which time an investigator will discuss the trial with the patient's physician. Once a patient is enrolled in a trial, the investigator will send updates and test results on a regular basis. Since research protocols may dictate more frequent examinations and tests than standard treatment, a longer period of hospitalization may be involved, and follow-up visits may be required because of the nature of the study. It is encouraged that health care providers and the NCI keep an open line of communication throughout the duration of the trial, and health care providers should feel free to contact the NCI research team at any time to discuss their patient's treatment and care.
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