NIAMS IR Partners Newsletter, Fall 2000

Historical document

Inside this issue:

NIAMS Meets With Community
on Health Center

Opening a facility, such as NIAMS Community Health Center, takes more than just renting space or hiring medical staff. It means gathering input from the community as well addressing its needs. With this in mind, NIAMS has listened to concerns and gathered ideas from Washington, D.C., area community members since the early planning stages of the center.

Warren Ashe, Ph.D., Barbara Mittleman, M.D., and Angela Richardson (L-R) exchange information.

Warren Ashe, Ph.D., Barbara Mittleman, M.D., and Angela Richardson (L-R) exchange information.

NIAMS staff have met with community leaders on several occasions to discuss plans for the health center, including its three proposed locations, medical staff, lay health educators, and health education programs. Responses were enthusiastic. Community leaders have encouraged NIAMS staff to share plans for the health center with the general community.

In August, the Vermont Avenue Baptist Church in Washington, D.C., held the first of several community meetings. About 80 people representing senior service, neighborhood advisory, and faith-based organizations, as well as academic institutions and District residents, attended. All were keenly interested, and there were additional requests for community meetings for their clients and members of their organizations.

Peter Lipsky, M.D., NIAMS scientific director, and Barbara Mittleman, M.D., the institute's director of scientific interchange, explained plans for the health center, which were received with enthusiasm.

Warren Ashe, Ph.D., dean of research at Howard University and NIAMS community advisor, rallied support for the health center when he explained its importance in reducing the burden of rheumatic diseases in the community and the importance of the community's acceptance and involvement in the health center's programs.

Angela Richardson, a member of the NIAMS Patient Representatives Group, ended the presentations by sharing her personal experience as a NIAMS patient while on a lupus protocol. She credited the institute with providing quality medical care. Her treatment included an NIH-developed regimen for a now-standard therapy for lupus, which had affected her kidneys.

NIAMS will work continuously with the community to ensure that the health center's programs are designed to meet its needs.

From the Scientific Director . . .

In this issue of IRPartners, we will tell you about a reception that marked the opening of the NIH Pediatric Rheumatology Clinic located in the Clinical Center. photograph of Peter E. Lipsky, M.D.The clinic will confirm diagnoses and suggest treatments for children with arthritis and other chronic rheumatic diseases. Also opening in the near future will be the NIAMS Community Health Center and two satellite clinics, located in Washington, D.C. We will share a story on the successful collaboration between NIAMS and the student architects of Howard University on the design of one of the clinics.

You will get to know some of our nursing staff, as well as learn about NIAMS award-winning publications, which are free to those who ask. NIAMS' much-anticipated Cartilage Biology Branch, which will use the power of genetics to study cartilage disease, is now a reality. And we will keep you informed about the latest information on NIAMS clinical trials, both established and upcoming.

Please join us as we share with you our excitement about the challenges that lie ahead. We hope you find this and every issue of IRPartners informative and useful.

Peter E. Lipsky, M.D., Scientific Director
National Institute of Arthritis and Musculoskeletal and Skin Diseases
National Institutes of Health

Designing Students Eye New Community Center

On Monday, September 11, seven third-year students from Howard University's School of Architecture and Design, Washington, D.C., presented their design plans for the new NIAMS Community Health Center's Upper Northwest, Washington, D.C., location.

Just six days earlier, the students were taken on a tour of the unfurnished facility that had been formerly used as an x-ray suite. They were given a list of requirements for the health center and, in less than a week, they each developed layouts for the space. The project was organized by Kristy Long, R.A., program manager in NIH's Division of Engineering Service; Joseph Eugene Taylor, M.A., adjunct associate professor at Howard; Barbara Mittleman, M.D., NIAMS director of scientific interchange and Peter Lipsky, M.D., NIAMS scientific director.

Howard University students Omar Clennon and Suzannah Codlin receive their design awards while NIH's Kristy Long looks on.

Howard University students Omar Clennon and Suzannah Codlin receive their design awards while NIH's Kristy Long looks on.

Each student presented a floor plan from the entry point into the medical suite. The students were sensitive to the needs of both patients with arthritis and the medical staff, as well as the needs of the community. After each presentation, the students handled questions from an audience of NIH architects and engineers, NIAMS staff, Howard University faculty, and others.

Dr. Mittleman expressed her gratitude for the students' participation in this project, which she noted "helps the institute better conceptualize the health center's needs and space requirements. It also gives the students 'real world' experience, by adding to their professional development as architects."

The audience of about 35 people rated students in four areas: concept/idea, development of concept/design logic, technical aspects, and graphics presentation. Designs with the highest scores earned awards for Suzannah Codlin and Omar Clennon. Other students received plaques for contributing their skill and creativity.

Meet . . .

Cheryl Yarboro, R.N., B.S.P.A.

After two years in the Army that included a stint at the nearby Walter Reed Army Medical Center, Washington, D.C., and five years in neonatal intensive care nursing at Columbia Hospital for Women, also in Washington, Cheryl Yarboro, R.N. (registered nurse), B.S.P.A. (bachelor of science in professional arts), joined the NIH in 1977. She is the photograph of Cheryl Yarboro, R.N., B.S.P.A. NIAMS research nurse for systemic lupus erythematosus and psoriatic arthritis. Mrs. Yarboro was formerly with the Clinical Center nursing staff at NIH. While on staff here at NIH, she has worked on early hepatitis/interferon treatment protocols; opened the Arthritis and Rheumatism Branch apheresis lab in 1979, where patients' blood components were studied to see if removal of certain compounds would have an effect on certain autoimmune disorders; and opened the 9 East Day Hospital in 1990.

Mrs. Yarboro received her nursing diploma from Sioux Valley Nursing School in Sioux Falls, S.D., and a B.S.P.A. degree from St. Joseph's College, North Windham, Maine.

Mrs. Yarboro, whom you can see jogging at 6:00 a.m. every morning on the NIH campus, is married and has a daughter living in Iowa.

Janet Jones, R.N.C., B.S.N.

Cotton, corn and cattle were Janet Jones' surroundings as she grew up. She was reared in Muldoon, Texas, on a farm where they raised and grew "everything." She is a captain in the U.S. Public Health Service, a certified pediatric nurse, and the research nurse for the NIH Pediatric Rheumatology Clinic and its clinical trials, as well as the dermatomyositis trials, which include adult patients.

The fifth of seven children, Mrs. Jones has spent much of her nursing career working with children and families. Upon graduating from Marillac College, Normandy, Mo., with her B.S.N. (bachelor of science in nursing), she worked at St. Mary's Hospital, Evansville, Ind., in obstetrics (pregnancies) and photograph of Janet Jones, R.N.C., B.S.N. taught childbirth classes to parents. St. Mary's was the first U.S. hospital to implement family-centered care, in which all members of the family can be together during birth and immediately afterwards.

Mrs. Jones came to Washington, D.C., "to see another part of the world." She joined the NIH Clinical Center nursing staff in 1974, where she worked in the intensive care unit. From 1977 until this year, she worked on endocrine and genetic research in children. She joined NIAMS in June and is thrilled to be a member of the rheumatology team during this exciting time of research on and treatment of these diseases.

Mrs. Jones enjoys bicycling, gardening, and traveling. She is married and has two stepdaughters.

Did You Know? NIAMS Has Free Health Information

NIAMS has free health information (some in Spanish) available to the public, health professionals and organizations. Information is available on arthritis and other rheumatic diseases, lupus, skin diseases, sports injuries and musculoskeletal diseases. Contact the NIAMS Information Clearinghouse at 1-877-22-NIAMS (free of charge), TTY: 301-565-2966. Check our Web site at www.niams.nih.gov/Health_Info/default.asp. Many of our publications can be printed directly from the site.

Free information on osteoporosis, Paget's disease of bone, osteogenesis imperfecta, primary hyperparathyroidism and other metabolic bone diseases and disorders is also available from the NIH Osteoporosis and Related Bone Diseases~National Resource Center (NIH ORBD~NRC). This nonprofit organization is supported by NIAMS, other NIH institutes and the Public Health Service. Contact the NIH ORBD~NRC at 1-800-624-BONE, TTY: 202-466-4315, or at www.osteo.org.

New NIAMS Clinical Trials

Dermatomyositis Trial

The safety and effectiveness of h5G1.1mAb, a genetically altered antibody, will be studied in participants. Medication currently used to treat dermatomyositis causes many side effects.

Dermatomyositis is a disease causing skin rash, muscle weakness, and sometimes other symptoms, and may be the result of an immune system abnormality.

Rheumatoid Arthritis (RA) Trial

Both infliximab (Remicade®) and methotrexate will be given to participants diagnosed with RA less than three years ago. Changes that occur in the bones and joints over a three-year period will be studied by magnetic resonance imaging (MRI) technology.

Rheumatoid arthritis is an inflammatory disease that causes pain, swelling, stiffness and loss of function in the joints.

Tumor Necrosis Factor Receptor-Associated Periodic Syndrome (TRAPS) Trial

After an observation period, participants will be injected twice weekly for three months with etanercept (Enbrel®). Participants will then be evaluated for response and a dosing adjustment made, if necessary. Participants will be evaluated for their response to the drug.

TRAPS is a genetic disease that results in fever and inflammation of the lungs and intestines, and sometimes a rash.

For information on NIH Clinical Trials, call 1-800-411-1222, or visit www.clinicaltrials.gov.

Gooch Memorial

NIAMS would like to thank the family and friends of the late Robert Francis Gooch for their memorial gifts to our institute. The NIAMS research program on arthritis and other rheumatic diseases of childhood will benefit through their generosity.

Klippel Retires

photograph of John Klippel, M.D.NIAMS' Clinical Director John (Jack) Klippel, M.D., has retired after more than 25 years of federal service. He has become the medical director of the Arthritis Foundation. NIAMS is conducting a nationwide search for a new clinical director.

NIAMS Publications Win Awards

The NIAMS bilingual publication, ¿Tengo Artritis? Do I Have Arthritis?, recently won an APEX 2000 Award of Excellence from Communications Concepts, Inc., a firm that helps organizations improve professional publications and communications programs. The booklet won in the category of special-purpose brochures, manuals and reports. The APEX 2000 awards were based on excellence in graphic design, editorial content and the success of the entry in achieving overall communications effectiveness and excellence.

¿Tengo Artritis? Do I Have Arthritis? is a Spanish/English booklet for people who think they may have arthritis, for their families and friends, and for others who want to understand more about the disease.

Another NIAMS publication, Lupus: A Patient Care Guide for Nurses and Other Health Professionals, recently won an Award of Excellence from the Society for Technical Communication, which is a professional association that advances the arts and sciences of technical communication. The booklet conveys to health professionals the definition, symptoms, diagnosis and treatment of lupus.

Both publications can be obtained by calling 1-877-22-NIAMS (free of charge) or on the NIAMS Web site at www.niams.nih.gov/Health_Info/default.asp.

New Cartilage Biology Branch Established

NIAMS has established the Cartilage Biology Branch in the Intramural Research Program. The branch will allow researchers to investigate new methods of studying the cause(s) and prevention of osteoarthritis (OA), as well as new techniques to regenerate cartilage tissue. Branch scientists will use genetic, molecular and cellular research to understand cartilage biology under normal conditions and in conditions that result in OA.

The Institute is currently seeking its first director for this new research branch.

Osteoarthritis is the most common joint disease, affecting nearly 20 million Americans. The major problem in osteoarthritis is deteriorating joint cartilage, resulting from abnormal wear without regrowth of new cartilage tissue. Cartilage is the "padding" between bones in the joints. Scientists think wearing away of this tissue may be caused by genetics, age and/or joint injury.

NIH Pediatric Clinic Opens

photograph of NIH pediatric rheumatology clinic speakers.A reception was held at the NIH Clinical Center on September 21 to mark the opening of the NIH Pediatric Rheumatology Clinic. The NIAMS-sponsored reception featured speakers from NIH and associated voluntary organizations:

(l-r) KaLea Kunkel, speaker; Renee Thomas, chair, American Juvenile Arthritis Organization; Raphaela Goldbach-Mansky, M.D., and Peter Lipsky, M.D., NIAMS; Robert Lipnick, M.D., clinic co-director; Janet Austin, Ph.D., and Janet Jones, R.N.C., B.S.N., NIAMS; Ann Kunkle, juvenile arthritis advocate; and Barbara Mittleman, M.D., NIAMS.

For more information on the NIH Pediatric Rheumatology Clinic, visit the NIAMS Web site at www.niams.nih.gov/News_and_Events/Press_Releases/2000/09_20.asp. For more information on NIH Clinical Trials, visit http://clinicaltrials.gov, or call 1-800-411-1222 (free of charge).

Former Clinical Center Director Decker Dies

Dr. John Laws Decker, Clinical Center director and NIH associate director for clinical care from 1983 until his retirement in 1990, photograph of Dr. John Laws Decker died of a heart arrhythmia July 13 in Bethesda. Dr. Decker came to NIH in 1965 as a chief of the Arthritis and Rheumatism Branch in what is now the NIAMS, serving as clinical director from 1976 to 1980 and scientist emeritus following his retirement. He steered the Clinical Center through challenging times, including overseeing changes required by Congress in research on AIDS. His studies in rheumatic diseases earned him international recognition. Survivors include his wife, Lucille Macbeth Decker of Bethesda, a son and three daughters.

Illustration of speaker at podiumNeed 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

Building 31, Room 4C02
31 Center Drive
Bethesda, MD 20892
Phone: 301-496-8190
Fax: 301-480-2814
E-mail: bettends@mail.nih.gov
Web site: www.niams.nih.gov

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