NIAMS Travels to Hill, Meets Children with Arthritis
ational Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) officials recently traveled to Capitol Hill to meet with youngsters with arthritis at a briefing sponsored by the Metropolitan Washington, D.C., chapter of the Arthritis Foundation. The briefing, hosted by Rep. Connie Morella (R-Md.), was part of Juvenile Arthritis Awareness Week.
NIH staff join Rep. Connie Morella (R-Md.) and young people with rheumatic diseases during a break in the briefing. In the back row (from left) are NIEHS’ Lisa Rider, M.D.; NIAMS’ Janet S. Austin, Ph.D.; and Rep. Morella.
NIAMS Director Stephen I. Katz, M.D., Ph.D., is at far right.
Featured speakers included NIAMS Director Stephen Katz, M.D., Ph.D., and Lisa Rider, M.D., a pediatric rheumatologist who works with the National Institute of Environmental Health Sciences (NIEHS). A mother and child affected by juvenile arthritis shared their perspectives on the challenges of chronic disease. Several families were introduced, each conveying their own stories of lives complicated by the monotony and hardship of chronic rheumatic disorders.
NIAMS' participation in Juvenile Arthritis Awareness Week demonstrated the Institute's collaborative relationship with health voluntary organizations. In his remarks, Dr. Katz emphasized NIAMS' work with its partners to achieve common goals: "We look forward to enhancing our already strong commitment to pursuing research for children with rheumatic diseases. The juvenile forms of these diseases present unique challenges—physically, emotionally and financially. We're committed to developing better approaches to their diagnosis, treatment and prevention."
Last year, NIAMS, in partnership with other NIH components, established the NIH Pediatric Rheumatology Clinic, a specialty-care medical facility on the NIH campus that provides an opportunity for both research and training in rheumatic diseases. Juvenile rheumatoid arthritis, lupus, dermatomyositis, ankylosing spondylitis and scleroderma are just a few of the rheumatic diseases that can affect children.
From the Scientific Director . . .
t has been a busy several months for the NIAMS Intramural Research Program since our last issue of IRPartners.
The Institute held a roundtable discussion on pediatric rheumatology where we received excellent recommendations to
further enhance our research efforts on rheumatic diseases.
Plans for the Community Health Center’s main clinic in Washington, D.C., are nearly complete, and we plan to open the clinic this summer.
Some of our staff have won honors for their professional achievements. Others have participated in Juvenile Arthritis Awareness Week and traveled to Capitol Hill with members of health voluntary organizations. And we’ve helped sponsor a biotechnology training program for some local high school students.
We’re pleased to provide this issue of IRPartners and look forward to bringing you many more.
Peter E. Lipsky, M.D., Scientific Director
National Institute of Arthritis and Musculoskeletal
and Skin Diseases
National Institutes of Health
NIAMS and Pediatric Rheumatology: Roundtable Recommends Roles
n IRP-sponsored roundtable on pediatric rheumatology has suggested ways NIAMS could expand its role in facilitating pediatric rheumatic disease research. Participants at the February meeting, including academic pediatric rheumatologists from the U.S. and Canada, Food and Drug Administration and industry representatives, and NIAMS staff, encouraged the Institute to:
- Coordinate a network to 1) foster communication, 2) serve as a database for clinical information, 3) facilitate the banking, sharing and distribution of samples, and 4) make possible multicenter trials not funded by industry.
- Develop education and training programs in which medical students, residents, fellows and faculty could rotate through NIH and learn research technology and methods to apply to pediatric rheumatology questions. A core curriculum in pediatric rheumatology could target adult rheumatologists seeing pediatric patients.
- Undertake clinical trials, particularly in areas where new agents and drug industry support are not available.
- Increase research in both basic science and rehabilitation, areas where further work is needed in pediatric rheumatology.
- Foster long-term followup of children treated for rheumatic disease, particularly since many patients survive well into adulthood.
Roundtable discussions included such topics as juvenile rheumatoid arthritis, lupus, connective tissue diseases and polymyositis/dermatomyositis. As new programs are developed, NIH's Pediatric Rheumatology Clinic will serve as an important resource.
The IRP plans to publish a summary of the roundtable on the NIAMS Web site, develop a plan for pediatric rheumatic disease investigation and hold similar roundtable discussions in the future.
Meet . . .
Mildred Wilson, R.N., B.S.N.
Raised in a small rural community in Suffolk, Va., Ms. Wilson always knew she wanted to be a nurse. The youngest of five children, she followed several aunts, cousins and her older sister into nursing. She received her nursing degree from Hampton University (Va.) and started her career in the government 18 years ago at the National Naval Medical Center. After three years there she came to the ninth floor of the NIH Clinical Center and never left. She began working with the NIH Clinical Center nursing staff of the 9D and 9East wards and the 9East day hospital. She then became coordinator for the arthritis clinic.
Ms. Wilson always wanted to carry out research. "I like getting involved with developing protocols, implementing research, recruiting people and introducing them to NIH," she says. She finds it rewarding to be involved in a team effort, researching the disease process and bringing people new drugs and information. Working with rheumatoid arthritis and myositis clinical trials, she knows that what she does today will impact the health of people in the future.
One of her most interesting experiences involved her work on a study that lasted a little over a year. She was the only medical representative on a team that regularly traveled to Texas to visit study subjects on campuses, at their homes or at their workplaces. "It was a great experience and presented some unusual challenges," she says. "Once we were stuck all night in the Las Vegas airport, but we arrived—without sleep or luggage—in time for our meeting."
Ms. Wilson also helped form a study group with colleagues preparing to become certified clinical research coordinators, and she is studying hard. It's obvious from her joking and friendly manner that she enjoys the company of her co-workers and their team environment. She has family nearby in Virginia, Pennsylvania and New Jersey.
Jane Dean, R.N., M.S.N.
Interested in research since 1972, Ms. Dean earned her B.S. degree in wildlife management from the University of Maryland, College Park. A native of Washington, D.C., she started her work in research at the Patuxent Wildlife Research Center in Laurel, Md., and continued at the Smithsonian's Museum of Natural History.
Deciding wildlife research wasn't her true calling, she turned to nursing and received a B.S.N. from Catholic University (D.C.). Remaining in the Washington area, she worked first at Children's Hospital, then at Suburban Hospital. But it was her next job with The Henry M. Jackson Foundation at the National Naval Medical Center where she was able to return to her interest in research. She joined NIH in 1999.
In her current job as a research nurse for NIAMS, she works on Tumor Necrosis Factor Receptor-Associated Periodic Syndrome (TRAPS)* and Familial Mediterranean Fever (FMF).+ "It's the perfect blend of nursing and research," she says. The independence of the position, the ability to manage her own time and the variety that her job provides keep her motivated and interested. She received a graduate degree (M.S.N.) in advanced practice nursing (chronic care) from George Mason University (Va.) in order to keep progressing in her field. "I'm fortunate to be doing something that I enjoy and that is professionally fulfilling."
She and her colleagues are currently preparing to take the certification exam for certified clinical research coordinator from the Association of Clinical Research Professionals. She shares her home with two cats she adores.
* TRAPS: Tumor Necrosis Factor Receptor-Associated Periodic Syndrome (TRAPS) is a dominantly inherited periodic fever. The disorder was originally called Familial Hibernian Fever, because it was first observed in people of Irish descent. It has been renamed TRAPS to reflect the common aspects of the disorder in families of diverse ethnic backgrounds.
* FMF: Familial Mediterranean Fever (FMF) is an inherited condition (hallmarked by joint inflammation and episodic fever) that is seen commonly in people of Jewish, Arab, Armenian, Turkish and Italian ancestry.
Ongoing Rheumatoid Arthritis (RA) Clinical Trial
IAMS has an ongoing clinical trial studying whether the drug combination of methotrexate and infliximab (Remicade®) is more effective than methotrexate alone for treating rheumatoid arthritis (RA) early in the disease. The Food and Drug Administration has approved both treatment regimens for patients with long-standing RA. This study will also evaluate how effectively magnetic resonance imaging (MRI) can detect changes that occur in the bones and joints.
Rheumatoid arthritis is an inflammatory disease that causes pain, swelling, stiffness and loss of function in the joints. Patients with RA must meet certain eligibility criteria in order to participate.
If you are interested in signing up for this trial, you can find out more about eligibility, number of visits to the NIH, how long you will need to participate and what you can expect as a volunteer. Call 1-800-411-1222, or visit www.clinicaltrials.gov. The protocol number for this trial is 00-AR-0220.
IRP Scientists Honored
Alasdair Steven, Ph.D., chief of IRP's Laboratory of Structural Biology Research, is the recipient of a Humboldt Research Award for Senior U.S. Scientists. The award, given in recognition of his accomplishments in research and teaching, will allow him to undertake extended periods of research with colleagues in Germany.
Ronald Wilder, M.D., Ph.D., was honored earlier this year with an on-campus symposium, "Rheumatoid Arthritis: Susceptibility and Pathogenesis." He has since left IRP's Arthritis and Rheumatism Branch to join private industry.
Scientists of Tomorrow
ate last year, NIAMS and the Foundation for Advanced Education in the Sciences sponsored an innovative biotechnology training program for students from NIAMS’ adopted school, Wilson Senior High School, in Washington, D.C. The program's objectives were to help students sharpen their observation skills, appreciate quantitative observations and acquire laboratory skills that they could use in many settings.
Twelve students were selected based on their academic performance and teachers' recommendations. They spent four Saturday mornings, from November 3 to December 16, 2000, at the Mary Woodward Lasker Center on the NIH campus. For one hour each day they heard lectures and participated in discussions, and spent the remaining two hours in the laboratory. They learned about using cell cultures to study normal and cancer cell behavior.
The program challenged the students to extend their thinking beyond the limits of class exercises. These sessions furthered the NIH's and the National Science Education Standards' missions to encourage inquiry-based science. The sessions also reinforced the education goals of Washington, D.C.'s, public schools.
At the conclusion of the program, the students attended a small reception and received their certificates. From all reports, it was an educational, stimulating and fun experience.
Housing the NIAMS Community Health Center
IAMS plans to open its Community Health Center this summer. Establishing this center is a major step in the NIAMS’ Health Partnership Program (HPP). The HPP is addressing health disparities among multicultural communities in the Washington, D.C., area. Through partnerships with state and local organizations, the HPP expands NIAMS’ public health education, clinical investigation and investigator recruitment efforts to communities disproportionately affected by these chronic diseases. As part of the program’s initial activities, the NIAMS Community Health Center will focus on rheumatic diseases.
Floor plans for the Community Health Center’s main clinic are nearly finished, as architects prepare to renovate a medical suite in northwest Washington, D.C. The suite is housed in a five-story building operated by Unity Health Care, Inc., a nonprofit health care agency. The Cardozo/Shaw neighborhood location is key to providing access to specialized medical care, health information and clinical studies to local communities who are disproportionately affected by arthritis and other rheumatic diseases, such as lupus and gout.
Pictured here is a three-dimensional model of the suite, which was designed with input from community leaders and representatives, as well as students from the Howard University School of Architecture and Design. The facility includes a reception area, restrooms designed for handicap accessibility, a waiting room for patients and their families, offices for medical staff and four exam rooms. Designers also carefully considered aesthetics such as colors (violet, turquoise and peach), floor tile, pictures and plants. A children’s play table will be included as well.
NIAMS' Kastner Receives Two Research Awards
aniel L. Kastner, M.D., Ph.D., chief of the genetics section of the Arthritis and Rheumatism Branch, was awarded the Lee C. Howley, Sr. Prize for Arthritis Research. The Arthritis Foundation presented this award in November 2000, in Orlando, Fla. The award recognizes researchers whose contributions during the previous five years have represented a significant advance in the understanding, treatment or prevention of arthritis and rheumatic diseases.
Joining Dr. Kastner, holding the Howley prize, are (from left) Don L. Riggin, past president and CEO, Arthritis Foundation; Dr. Margaret Beckwith, Dr. Kastner’s wife; and William J. Mulvihill, immediate past chair, Arthritis Foundation.
Kastner has also been awarded the Paul Klemperer Award and Medal, and he gave the Paul Klemperer Memorial Lecture in October 2000. The New York Academy of Medicine presents these honors annually to an individual for outstanding scientific achievements and contributions to the study of connective tissues and their diseases.
Kastner led a team that cloned the gene responsible for Familial Mediterranean Fever (FMF), an inherited condition that can cause joint inflammation and episodic fever. His group also identified the genetic basis of a second periodic disorder of inflammation, the Tumor Necrosis Factor Receptor-Associated Periodic Syndrome (TRAPS). He has also contributed to understanding the genetic basis of cystinuria, a rare disorder that can cause kidney stones. He will continue to study FMF and TRAPS, and his group is beginning a major initiative to study the genetics of more complex disorders, such as rheumatoid arthritis.
Did You Know? NIAMS Has Free Health Information
IAMS 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. Our most recent publications are:
Contact NIAMS at 1-877-22-NIAMS (free call), TTY: 301-565-2966. Check our Web site at: www.niams.nih.gov/Health_Info. Many of our publications can be printed directly from our 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.
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 the 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
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
Susan Bettendorf, Associate Editor