Home to the NIH Undiagnosed Diseases Program
Patients in the National Institutes of Health’s Undiagnosed Diseases Program are no strangers to hospitals, clinics, and doctors’ offices. But their experience at the NIH Clinical Center—America’s clinical research hospital and the world’s largest hospital dedicated totally to clinical research—is a new one. Through clinical research, promising discoveries in the laboratory are translated into better health and health care for all.
History of Medical Milestones
At the NIH Clinical Center, clinical research participants—more than 400,000 since the hospital opened in 1953—are active partners in medical discovery, a partnership that has resulted in a long list of medical milestones. Among these milestones has been the first cure of a solid tumor with chemotherapy, gene therapy, use of AZT to treat AIDS, and successful replacement of a mitral valve in the heart.
“Our patients come from every state and from around the world,” says John I. Gallin, M.D., Clinical Center director. “These partners in research and our specially trained staff collaborate to help advance medical knowledge that leads to new cures, therapies, and treatments.”
Currently, there are about 1,500 clinical research studies in progress at the NIH Clinical Center. About half are studies of the natural history of disease, especially rare diseases, which often are not studied anywhere else. What researchers learn by studying rare diseases often adds to the basic understanding of common diseases. Most other studies are clinical trials, which often are the first tests of new drugs and therapies in people. The clinical trials at the NIH Clinical Center are predominantly Phase I and Phase II, often first-in-human to test safety and effectiveness.
Imagination and Collaboration of Specialists
Some 1,200 physicians, dentists, and Ph.D. researchers; 620 nurses; and 450 allied healthcare personnel work in patient care units and laboratories in numerous areas of clinical study. Specialists conduct research at the NIH Clinical Center in musculoskeletal and skin diseases; cancer; dental and craniofacial disorders; eye disorders; heart, lung, and blood diseases; infectious diseases; medical genetics; mental health; and neurological disorders.
All this expertise under one roof allows patients of the Undiagnosed Diseases Program to see specialists in one week that it would take months, if not years, to see elsewhere. At the NIH Clinical Center, investigators can make referrals for immediate testing and confer with peers across specialties to come up with the best approach for diagnosing and treating these patients.
Providing comfort and support
The NIH Clinical Center sees 10,000 new research participants a year. There are two types of research participants: patient volunteers and healthy volunteers. Patient volunteers are people with specific diseases or conditions who help medical investigators learn more about their condition or test new medications, procedures, or treatments. A healthy volunteer is a person with no known significant health problems who plays a vital role in research to test a new drug, device, or intervention.
There are many programs in place to ease the clinical research process for both patients and their families. Pediatric patients and their families stay at The Children’s Inn, a 24-hours-a-day, seven-days-a-week, 365-days-a-year operation, where kids can be kids, instead of patients. There is also a school teaching kindergarten through high school, with a classroom and teachers who will go to the bedside.
For families and loved ones of adult patients, The Edmond J. Safra Family Lodge offers a home-like place of respite just steps away from the NIH Clinical Center, providing space for solitude, family meetings, and supportive fellowship.
Training the next generation
The NIH Clinical Center offers an extensive range of clinical research training to help prepare the next generation of clinician-scientists. The innovative curriculum includes courses in pharmacology, principles and practice of clinical research, and bioethics.
Recently, the NIH Clinical Center launched the Sabbatical in Clinical Research Management program for clinical investigators, healthcare managers and administrators, and others who oversee clinical trials. The program focuses on what they need to manage a clinical or translational research effort.
Two new programs will bring early career investigators to the NIH Clinical Center. They include partnerships between the Damon Runyon Cancer Research Foundation and the National Cancer Institute and the NIH and the Albert and Mary Lasker Foundation.
“This is a first step toward opening the doors of the Clinical Center to clinician-scientists, further supporting the NIH mission to enhance health,” says Dr. Gallin.