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VA rheumatoid arthritis registry fills important niche

Click on the image above to view UNMC’s Ted Mikuls, M.D., commenting on the VARA registry.

More than 2 million Americans suffer from RA with females composing more than two-thirds of those with the disease. Thus most research of the disease concerns females.

The veteran’s registry, called VARA (Veteran’s Affairs Rheumatoid Arthritis registry) stands to be an important source of information in the study of males with the disease, said Ted Mikuls, M.D., an associate professor of rheumatology at UNMC who oversees the registry at the Omaha division of the VA Nebraska-Western Iowa Health Care System.

“While fewer men suffer from RA, that doesn’t discount the fact that men compose a significant portion of RA sufferers,” Dr. Mikuls said. “Because the veteran population is so overwhelmingly male, we are in a special position to gather information about men suffering from the disease.”

Males account for almost 90 percent of the roughly 900 veterans with information in VARA — making it perhaps the nation’s top source of information about male RA sufferers, Dr. Mikuls said.

Dr. Mikuls and Amy Canella, M.D., an assistant professor of rheumatology at UNMC who also works at the Omaha VA, started VARA in 2002. The database contains clinical and biological information about the patients who volunteer to submit such data to VARA.

Additional collaborators from UNMC and the Omaha VA include Geoff Thiele, Ph.D., who has been responsible for the day-to-day operations of the biologic repository — including banked DNA and serum — and Kaleb Michaud, Ph.D., who has assisted with database management and initial analyses.

At first, information came just from local veterans with RA, but VA medical centers in Dallas, Washington and Salt Lake City have began contributing information to the database. VA centers in Denver and Jackson, Miss., also are looking into contributing data.

In rheumatoid arthritis, the immune system promotes inflammation of the joints, leading to joint deformity and functional disability. Scientists know little about what causes RA but most believe both genetics and the environment play a role in the disease.

The VARA registry allows researchers to examine specific medical and biological information about hundreds of male RA suffers to see what genetic and environmental factors may have played a role in the patients’ disease, Dr. Mikuls said.

“This allows us to see if certain factors are more or less prevalent and possibly contributing to disease risk in males,” Dr. Mikuls said.

Leading RA scientists from around the nation, including Peter Gregersen, M.D., of The Feinstein Institute for Medical Research in Manhasset, N.Y., and UNMC’s James O’Dell, M.D., have expressed interest in the data collected in VARA.

VARA’s value is that it contains specified information from a well-defined group — males, Dr. Gregersen said.

“You don’t usually find such a well-defined cohort,” said Dr. Gregersen, who has led the world’s largest effort to identify the genes involved in RA.

Dr. Gregersen has mined hundreds of millions of genotypes from VARA, which that he plans to use in his research.

Being able to look at such a specified group of RA patients may offer insight into whether different genetic and environmental factors play into the cause of RA in males, he said.

That VARA offers researchers access to clinical data and biological samples from patients buoys its importance and strength as a resource for scientists, said Dr. O’Dell, UNMC professor of internal medicine and chief of the rheumatology and immunology section.

“The vast amount of detailed information available in the database really makes this a critically-important research resource,” Dr. O’Dell said.

Both Drs. Mikuls and O’Dell credited the veteran population for being willing to participate in VARA.

“The willingness of the veterans to participate in this study has been inspiring,” Dr. Mikuls said. “Veterans are selfless people who look to help others however they can. That’s really apparent as they participate in the database, which stands to benefit countless others.”

Dr. Mikuls said VARA is easy to access and is open to almost any VA scientist who wants to view the information. Researchers interested in accessing the database may contact Dr. Mikuls at tmikuls@unmc.edu.