LITTLE ROCK — A registry that matches people’s health interests with research studies at the University of Arkansas for Medical Sciences (UAMS) now has more than 5,000 Arkansans signed up.
The milestone was reached just two years after the registry was created to help address the critical need for research study volunteers.
“Five thousand is significant because now we are reaching a critical mass of volunteers needed to help our researchers meet their study enrollment targets and produce high-quality findings,” said Laura James, M.D., director of the UAMS Translational Research Institute, which established the registry. “We appreciate the tremendous support of our fellow Arkansans. They tell us wherever we recruit that they love UAMS and enthusiastically support our research mission.”
The registry is at ARresearch.org, a UAMS website created by the Translational Research Institute with input from its Community Advisory Board and UAMS patient advisory groups. Registrants select from a list of 29 health interest areas (allergy, heart disease, skin disorders, etc.) so that researchers know who to contact when they have studies in those health areas. Registrants can select as many of the categories as they want. Studies at UAMS range from clinical trials (investigational drugs and devices) to health-related surveys and tests of health interventions.
One researcher who has found the registry invaluable is John Arthur, M.D., Ph.D., professor and chief of nephrology in the UAMS College of Medicine. Arthur was able to find 31 participants for his research studying bacteria in the gut of chronic kidney disease patients.
“We really couldn’t have conducted this research without the ability to find fairly large numbers of healthy volunteers, and ARresearch has been fabulous for that,” said Arthur, also associate director of the Translational Research Institute. In addition to helping UAMS researchers, the registry is also popular with Arkansans.
Nathanial Noble, of Little Rock, joined the ARresearch.org registry last year after hearing about it at a Rotary Club luncheon. He checked the “Healthy Volunteer” option on the form and soon received an email from UAMS asking if he would be interested in participating in Arthur’s kidney research study.
“It hit home because my dad was on dialysis the last years of his life,” Noble said. “I felt that I needed to do my part so maybe someone else’s dad won’t have to go through the same experience.”
Noble said his participation was a good experience. “They were very personable and walked me through the tests they were running. Mine was in three parts and they did whatever it took to work around my schedule.”
Anita Rose, of North Little Rock, helped put the registry over the 5,000 mark when she joined during the Back to School Bash at North Little Rock Academy on Aug. 11. She said the word “research” immediately got her attention when she saw the ARresearch.org booth.
“My mom had breast cancer and we need that researched more,” Rose said, adding that as an African-American, she wants to be sure her race is represented. “It needs to be done with people of color, Hispanics, and others because everybody is different.”
Jean McSweeney, Ph.D., R.N., who led development of ARresearch.org, noted that the registry’s diversity compares well to Arkansas census data. In fact, it has a higher percentage of African-Americans, Asians, Native Americans and Pacific Islanders than is reflected in Arkansas census data.
“We’ve worked hard to ensure that we are recruiting a diverse pool of registrants, and we are proud to have registrants from all 75 Arkansas counties,” said McSweeney, professor and associate dean for research in the College of Nursing. “I think our success can be attributed in part to the early involvement of diverse community representatives when we were developing ARresearch.”
Nationally, up to 48 percent of research studies fail to meet their enrollment goals and most require twice the amount of time to meet their recruitment goals than originally planned, according to a 2013 Tufts University study. As a result, increasing public participation in research has become a priority for the National Institutes of Health (NIH). The Translational Research Institute represents UAMS as part of a national consortium of Clinical and Translational Science Award (CTSA) Program institutions supported by the National Center for Advancing Translational Sciences (NCATS) of the NIH.