First-of-its-kind registry matches volunteers with medical studies

ResearchMatch.org boosts health research By Christina E. Sanchez • THE TENNESSEAN • November 20, 2009 In the age of the World Wide Web, people are a click away from finding old friends, meeting potential soul mates, and now, helping to discover cures or treatments for diseases. Some of the nation's leading research institutions, including Vanderbilt University and Meharry Medical College, have teamed up to create the first national research study recruitment registry. ResearchMatch.org pairs volunteers who want to participate in research with the best studies that might be a good fit for them. The nonprofit site is designed to increase the chances that studies translate into cures, treatments and preventions for diseases. As things stand now, limited funding forces researchers to find participants by word-of-mouth, short radio spots, newspaper advertisements or supermarket bulletin boards. Some trials never get up and running due to few volunteers. ResearchMatch is free, and it connects volunteers and researchers nationally. People who sign up are not obligated. "Clinical research is often stymied by finding the right patient who wants to volunteer," said Dr. Gordon Bernard, associate vice chancellor for research at Vanderbilt. "We don't think it's because people don't want to volunteer." According to the National Institutes of Health, about 4 percent of the nation's population has participated in a research study. Because of low participation rates, about 85 percent of trials don't finish on time, and about 30 percent never enroll a single patient. Currently, the only comparable registry is Clinicaltrials.gov, which is run by the National Institutes of Health. The site puts the burden on volunteers to choose which studies might work for them. Vanderbilt University spearheaded the development of the new match site with a $200,000 grant from the National Center for Research Resources.The site launched Nov. 10 after a year of planning. More than 52 institutions will participate in the first year. Kristin Woody Scott, Vanderbilt's liaison for the program, said the site is supposed to complement other recruitment tactics to boost recruits. "There is potentially a research opportunity for everyone," Scott said. "This is a disease-neutral site, meaning it doesn't matter your background. The only limitation is you must be in the U.S." To join, people give their name and contact information and answer several questions. If a trial match is found, they will receive an e-mail. They can choose to proceed or turn it down. No information is released without consent. Thousands of clinical studies are happening at any given time. Right now, there are more than 80,000 trials in 170 countries, including almost 5,000 in Tennessee. But some trials never get started because there are not enough volunteers. "At the most basic level, one of the difficulties with doing research with humans is to be able to enroll enough people in a study so the results will have meaning from a statistical standpoint at the end of the day," said Jared Elzey, research liaison at Meharry Medical College. Often, the same people may volunteer repeatedly, or researchers may overuse the same groups, Elzey said. Meharry, which does a lot of studies on health disparities among minorities, often comes across the same people willing to help science. "It's difficult to enroll enough people," he said. "People (we need for our studies) have a lot of other pressures on their time, lack understanding about the research, or perhaps there is an organizational distrust. This (site) will allow us to interact with a much broader community." Doctors routinely ask patients who may fit the prototype for a study if they are willing to sign up. That's how Mary and Phillip Hill joined a Vanderbilt study two years ago. Phillip Hill, who has age-related macular degeneration, an eye disorder that can cause vision loss, was asked by his doctor to participate. His wife also joined as the control — a person without the disease who has lived a similar life. They have been married 50 years. Phillip Hill, who had a heart transplant, also has been in a study on heart disease for six years. He also signed up after his doctor asked. "We have enjoyed some benefits; we felt like it was important for us to give back," Phillip Hill said. "This could help our children or our grandchildren or even your grandchildren," Mary Hill said