New Research Registry to Examine Rheumatoid Arthritis in African Americans

Four major academic medical centers in the southeast United States will soon be gathering data for investigators interested in the genetics of rheumatoid arthritis (RA) in African Americans, with support from the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS). The Institute, a component of the National Institutes of Health (NIH), has awarded a research contract for the Consortium for the Longitudinal Evaluations of African Americans with Early Rheumatoid Arthritis (CLEAR) Registry to the University of Alabama at Birmingham (UAB). Other participating centers are Emory University, the Medical University of South Carolina and the University of North Carolina. NIH's Office of Research on Women's Health and National Center on Minority Health and Health Disparities also supported this contract.

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., NIAMS director.

"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: tina.parkhill@ccc.uab.edu) or Fannie Johnson, R.N. (205-934-7427; e-mail: fannie.johnson@ccc.uab.edu) The Spain Rehabilitation Center University of Alabama, Birmingham Arthritis Center Clinical Intervention Program SRC 068, ZIP 7201 1717 6th Avenue South Birmingham, AL 35294 fax: 205-975-5554