Inside this issue:
From the Scientific Director . . .
Welcome to the inaugural issue of IRPartners, a newsletter designed to keep you informed about the people, clinical studies, events and opportunities that are at the heart of the intramural research program (IRP) of the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS). The IRP is the part of NIAMS that is located on the Bethesda campus and functions like a combination of a basic research and clinical research unit along with a clinical care component. IRPartners is intended to convey the excitement of participating directly in the activities at our NIAMS IRP facilities.
In these pages we invite you to meet the staff of the IRP, find out how our research studies are progressing, and even help improve the awareness of current and future clinical studies that will help us treat and, perhaps, even cure disease. We hope you will share IRPartners with family and friends, neighbors, and even organizations to which you belong. Feel free to reproduce any part of it.
At NIAMS, we are committed to informing our research partners fully about the vital work in which they are engaged. We hope that IRPartners broadens the view for all of us.
Peter E. Lipsky, M.D., Scientific Director
National Institute of Arthritis and Musculoskeletal and Skin Diseases
National Institutes of Health
Connecting with Communities
to Increase Access to NIAMS
The health of a nation depends on the health of its communities. Recognizing this, the National Institute of Arthritis and Musculo- skeletal and Skin Diseases (NIAMS) is launching the first phase of its Health Partnership Program--A NIAMS Diversity Outreach Initiative, a new program to address the health disparities in rheumatic, musculoskeletal, muscle, bone and skin diseases that exist in minority communities.
A Model Community-Based Program
The initial phase of the HPP has begun as a model community-based program in the African American community in the metropolitan Washington, D.C., area. Presently, the focus of the program is rheumatic diseases. Eventually, the program will address health disparities in musculoskeletal, muscle, bone and skin diseases among African American and other minority communities across the country.
NIAMS staff met with community leaders and representatives in February to gain insight into the community's needs regarding rheumatic diseases. Participants identified ways to provide health education and patient care to the community, as well as ways to increase the number of African American investigators. Already, results have emerged: a draft health promotion plan has been developed to guide local HPP activities for this particular community.
Plans are also underway for a new rheumatology clinic to be located in a centrally accessible area of Washington, D.C. The clinic will provide additional access to quality health care services for patients. Also, it will increase training opportunities in patient care and research protocol development for African American investigators.
Through partnerships with state and local organizations, the HPP expands the institute's public health education, clinical investigation, and investigator recruitment efforts to minority communities disproportionately affected by these chronic diseases.
Groups such as African Americans, Hispanic Americans, American Indians and Alaskan Natives, and Asian Americans experience many of these diseases both in increased numbers and increased severity. Compared to the general population, the prevalence of systemic lupus erythematosus (SLE), an autoimmune disease that can range from a mild skin rash to major organ failure, is higher among African Americans and Hispanic Americans. These groups also experience more complications of SLE. African Americans also have higher rates of hip and knee osteoarthritis, a degenerative joint disease that causes pain and joint damage. Scleroderma, an autoimmune disease that causes hardening of the skin and can affect major organs, occurs with greater frequency in the Choctaw American Indians. Asian American women experience rheumatoid arthritis at rates higher than the general population as well.
To address such disparate health conditions, the HPP concentrates on four key areas: (1) public health education, (2) patient care, (3) access to clinical investigations, and (4) recruitment to research careers. Collaboration with state and local organizations that work with or represent minority communities helps to ensure that the program's stategies are designed to meet community needs.
Public education activities increase and expand upon the awareness of the program's targeted diseases. Patient care emphasizes early detection and treatment of the targeted diseases and evaluates subspecialty care, such as rheumatology, in the minority community. This also includes assessment of the natural history of disease in the community. Opportunities to participate in clinical investigations expand patients' access to current studies for treatment and prevention of chronic disabilities associated with the program's targeted diseases. Specific strategies are planned to increase the number of underrepresented minority investigators in the biomedical research fields related to the targeted diseases. These include developing science education curricula as well as training and mentoring programs for students, teachers and researchers.
Patient Representatives Group
A Patient Representatives Group, a component of the HPP, reviews a variety of topics, including health education information and clinical research protocols. They also support and encourage patients who are new to research protocols. The group is made up of people who are participating in the institute's clinical investigations. As a benefit to the institute, this group helps to ensure that the research and education programs are tailored to the needs of the patients who participate in clinical investigations.
IRP is also establishing this newsletter as a result of the group's activities so far. This will increase awareness of the institute's ongoing research activities. The newsletter will include information on clinical investigations, news related to patient care and articles on intramural program staff. Additionally, a new NIAMS bookmark will be designed as a quick and easy reference to the institute's information services.
By working more closely with communities to identify culturally sensitive implementation strategies, NIAMS hopes to reduce the gaps in health disparities for communities disproportionately affected by the diseases in its research portfolio.
NIAMS Expands Patient Care to Children
and Minority Communities
NIAMS is opening two rheumatology clinics to enhance diagnosis and treatment for children and minorities with arthritis and other rheumatic diseases. A pediatric rheumatology clinic, located on the NIH campus in Bethesda, Md., will provide medical care for children, while a community-based rheumatology clinic, located in Washington, D.C., will extend services to local residents through the institute's intramural research program.
"Timely diagnosis of arthritis and other rheumatic diseases is imperative for optimal response to treatment," said Peter E. Lipsky, M.D., scientific director of the NIAMS. "We hope that by making medical services more accessible to these patient groups, we'll increase the rate of early diagnosis."
According to President Clinton's initiative on health disparities, insufficient quality health care, preventive and treatment services, and education contribute to disparities in health. To address these factors, the new clinics will offer quality patient care and scientifically based public health information that is not readily available to these patient groups.
Studies indicate that children and minority groups with rheumatic diseases have limited access to quality health care. Factors contributing to the poor health care of pediatric patients include lack of pediatric rheumatology specialists and limited options for drug treatment. For the minority patient groups, these factors include low utilization of health care services and treatment, late diagnosis of disease and inadequate referral to health care professionals. Medical experts at the clinics will evaluate the biological factors of disease, such as its cause and effects on the body, as well as the behavioral and social factors that affect a patient's health.
In both clinics, patients will be involved in natural history assessments to help medical experts better understand the causes of rheumatic diseases. Through participation in clinical investigations, they will receive a full medical evaluation, including diagnostic procedures such as laboratory tests and x rays. Patients also will be given access to the latest investigative treatments. In addition, scientifically based public health information will be provided through one-on-one provider/patient communication as well as interactive health education workshops.
As an added benefit to both patients and medical experts, the clinics will use state-of-the-art medical equipment, such as the magnetic resonance imaging (MRI) machine. The MRI, which is used for diagnostic procedures, minimizes the use of invasive techniques for patients, while providing information for medical experts to get a better "picture" of how joints are affected by rheumatic diseases.
"What patients can expect immediately by attending these clinics is a good health care evaluation and quality patient care," continued Dr. Lipsky. "Ultimately, we hope to have a positive impact on their overall health care experience."
The Pediatric Rheumatology Clinic
The Pediatric Rheumatology Clinic will be located at the Warren Grant Magnuson Clinical Center on the NIH campus. The clinic will serve as a specialty carefacility for children up to age 16 who are suspected of having, or have a confirmed diagnosis of, a rheumatic disease.
Initially, patients will have the opportunity to participate in the institute's natural history studies for rheumatic diseases, including lupus and periodic fever syndromes. Additional study areas include (1) uveitis, a condition in which the middle of the eye becomes inflamed causing blurred vision, pain, redness and sometimes loss of vision, and (2) Wegener's granulomatosis, an inflammatory blood vessel disorder that causes fever, fatigue, swollen joints, swollen muscles and chronic sinusitis. These studies will be conducted by the National Eye Institute (NEI) and the National Institute of Allergy and Infectious Diseases (NIAID), respectively. Soon, NIAMS will establish projects for other rheumatic diseases.
The clinic will be staffed by a pediatrician, Dr. Raphaela Godbach-Mansky, on staff at the NIAMS, and two pediatric rheumatologists, Dr. Karyl Barron, deputy scientific director of NIAID, and Dr. Robert Lipnick, a specialist with a private practice in Washington, D.C. Clinical fellows will staff the clinic as well. The clinic will be open on Tuesday mornings. Medical st3
aff will determine if additional days and times are needed.
The NIAMS Community Center and Clinic
The NIAMS Community Center and Clinic, located in Washington, D.C., will be an extension of the institute's rheumatology research program located on the NIH campus. It will provide patient care to local residents who are suspected of having, or have confirmed diagnosis of, a rheumatic disease. In addition, the clinic will provide training opportunities in patient care and research protocol development for minority investigators. Finally, it will be a center for education about arthritis and related diseases, such as lupus, scleroderma and myositis.
The clinic will be located within a facility operated by the Unity Health Care, Inc., a community-based health management company. However, patients will be seen at additional Unity Health Care sites, in southeast and northeast Washington, D.C. Location of the clinic is key to providing medical care that is easily accessible to patients from local minority communities.
The clinic will operate under a cooperative agreement with Unity Health Care. As part of this agreement, patients from Unity will be referred to the NIAMS Community Center for specialty care. However, self-referrals and physician referrals from other medical facilities will be accepted as well. Through participation in clinical investigations, patients will receive a medical evaluation to assess their medical condition. When necessary, patients will be referred to the NIH clinical center for further evaluation and opportunities to receive promising investigative treatments. Transportation to both the rheumatology clinic and the clinical center will be provided when needed.
Initially, staff for the center will include a rheumatology specialist, rheumatology fellows, a nurse practitioner/physicians assistant and a vocational nurse. The rheumatology center will operate daily. Hours for the additional clinics will be set as arrangements are confirmed.
Opening ceremonies for the rheumatology clinics are being planned, and more information is forthcoming.
NIAMS Launches Rheumatology Network
The NIAMS has initiated a new effort to connect its fellows with rheumatologists in the community: the NIAMS Rheumatology Network (NRN). The network, begun in February 2000 with a meeting in Bethesda, will focus on education, research and communication, and is intended to benefit community doctors and the NIAMS intramural program at the same time. Co-chairs of the NRN are Dr. Philip Kempf of Arlington, Va., and Dr. Barbara Mittleman of NIAMS.
Through the network, community rheumatologists will have the opportunity to mentor rheumatology fellows in their offices, providing the fellows with a chance to see the breadth of experiences in a general rheumatologist's office. In turn, community doctors will be able to learn about ongoing and new clinical research protocols at NIAMS, involve their patients in them, and even suggest new areas of investigation. Another meeting is scheduled for June, with an agenda that includes a progress review of the NRN, plans for fellow rotation in community offices, and a presentation by NIAMS' Dr. Peter Lipsky on "TNF-Alpha Locking Agents: Science and Clinical Practice Issues."
NIAMS Establishing Patient Representatives Group
The NIAMS Intramural Research Program is working with the Office of Communications and Public Liaison (OCPL) to establish a Patient Representatives Group. The group will enable NIAMS to get feedback on our programs from patients enrolled in our clinical research studies and from individuals interested in these programs.
The first meeting was held February 26. Nine patient representatives met with institute staff, including Dr. Peter Lipsky and other intramural research and nursing staff as well as members of OCPL. (Another 10 patients are interested in participating in the future.) Some themes have emerged thus far:
- There is a general lack of awareness of the National Institutes of Health and of the NIAMS and its research and information programs. These programs should be made more accessible to the public.
- NIAMS should use several ways to increase awareness of and information about its studies, services and publications for patients and the public as well as for health professionals.
- Patients would like to know more about the results and progress of the studies they are involved in.
Together, we are considering these themes and how to address them. This new newsletter is one result. For more information on NIAMS intramural research programs involving patients, see the Clinical Studies page of the NIAMS Web site at http://www.nih.gov/niams/clinical. This page also links to other patient studies funded by NIAMS and by NIH.
Meet. . . Barbara B. Mittleman, M.D.
Dr. Mittleman, director of the NIAMS Office of Scientific Interchange who trained as an internist and rheumatologist at the University of Pittsburgh, came to NIH in 1991 to study the immunology of autoimmunity and autoimmune disease. At various times in her career, she has focused on lupus in mice; cytokines in human rheumatic disease; and postinfectious autoimmunity in children.
The former program director for the immunobiology of aging in the Biology of Aging Program at the National Institute on Aging, she has a faculty appointment at Georgetown University Medical School. She is also a Fellow of the American College of Rheumatology.
Dr. Mittleman looks forward to fostering effective and beneficial relationships between the NIAMS IRP and extramural scientists, physicians, patients and the general public. She also wants to continue her efforts in basic science, immunology and patient-related care and research.
Need an NIH Speaker?
The NIH Speakers Bureau is a service that lists NIH researchers, clinicians, and other professionals who are available to speak to school groups and other local and national organizations. Speakers have expertise in such areas as arthritis, osteoporosis, autoimmunity, and several dozen other topics covered by NIH. To find out more about this service, sponsored by NIH's Office of Science Education, visit its Web site at https://science-education.nih.gov/spkbureau.nsf .
National Institute of Arthritis
and Musculoskeletal and Skin Diseases/NIH
Building 31, Room 4C02
31 Center Drive, MSC 2350
Bethesda, MD 20892-2350
Produced by the National Institute of Arthritis
and Musculoskeletal and Skin Diseases/NIH
Office of Communications and Public Liaison
Stephen I. Katz, M.D., Ph.D., Director
Peter E. Lipsky, M.D., Scientific Director
Barbara B. Mittleman, M.D., Director,
Office of Scientific Interchange
Ray Fleming, Editor
Janet Howard, Associate Editor