The registry will provide clinical and x-ray data and DNA to help scientists
analyze genetic and nongenetic factors that might predict disease course and
outcomes of RA in this population. Certain genes that play a role in the immune
system are associated with a tendency to develop RA. Some individuals without
these genes may develop this disease, while others who possess the genes never
develop RA. Scientists believe that some environmental factors may play a
part, triggering the disease process in people whose genetic makeup makes
them susceptible to RA.
The investigators intend to register 600 participants. Since there are currently
no ongoing studies evaluating early RA in African Americans, the investigators
have focused on this population. African Americans are underrepresented in
most clinical studies, including current observational studies of people with
RA. "Identifying any factor, genetic or otherwise, that may predispose an
individual to rheumatoid arthritis or provide clues to an individual's disease
outcome will greatly improve our efforts to treat and ultimately prevent this
disease which affects so many people," said Stephen I. Katz, M.D., Ph.D.,
"This registry of African Americans with early RA will be critical in identifying
risk factors, including genetic and environmental, that point to a more aggressive
disease process," said Larry Moreland, M.D., principal investigator of the
CLEAR Registry. "Ultimately, the ability to identify patients very early in
the disease process who might have a worse long-term outcome will allow physicians
to provide better treatments for these patients."
Participating investigators are S. Louis Bridges, Jr., M.D., Ph.D., co-director
of CLEAR at UAB; Doyt L. Conn, M.D., and Janet McNicholl, M.D., at Emory University,
Atlanta, Ga.; Edwin Smith, M.D., and Gary Gilkeson, M.D., at the Medical University
of South Carolina, Charleston; and Beth Jonas, M.D., and Leigh Callahan, Ph.D.,
at the University of North Carolina, Chapel Hill.
RA is an autoimmune disease, in which the body's immune system attacks its
own tissues. It occurs in all races and ethnic groups, and affects about two
to three times as many women as men. Scientists estimate that RA affects the
lives of one percent of the adult population in the United States, although
young adults and children can also be affected. Symptoms and severity vary
greatly among individuals, and may include inflammation, pain, swelling, stiffness
and progressive loss of function in the joints. It may also cause fatigue,
occasional fever and a general sense of not feeling well. In some cases, the
internal organs and systems can become involved and ultimately damaged.
Patient enrollment for the registry is projected to begin in late spring
2001. The project is funded under NIH contract # N01-AR-0-2247.
The National Institute of Arthritis and Musculoskeletal and Skin Diseases
(NIAMS) is a component of the National Institutes of Health. The mission of
the NIAMS is to support research into the causes, treatment and prevention
of arthritis and musculoskeletal and skin diseases, the training of basic
and clinical scientists to carry out this research, and the dissemination
of information on research progress in these diseases. For more information
about NIAMS, call our information clearinghouse at (301) 495-4484 or (877)
22-NIAMS (free call) or visit the NIAMS Web site at http://www.nih.gov/niams.
To interview Dr. Larry Moreland, contact Joy Carter, Office of Media Relations,
University of Alabama at Birmingham, at 205-934-1676.
To enroll in the registry, contact one of the following individuals who
will direct you to the appropriate representative in each participating state:
Tina Parkhill (205-934-9368; e-mail: firstname.lastname@example.org)
Fannie Johnson, R.N. (205-934-7427; e-mail: email@example.com)
The Spain Rehabilitation Center
University of Alabama, Birmingham
Arthritis Center Clinical Intervention Program
SRC 068, ZIP 7201
1717 6th Avenue South
Birmingham, AL 35294