A new national initiative involving UT Southwestern Medical Center will match volunteers who want to take part in medical research studies with the scientists who are leading those studies.
ResearchMatch is a national partnership that will provide a free meeting place — via the Web ? where volunteers can be matched to a scientific research project, or clinical trial, for which they might qualify.
“For the people of North Texas, it offers access to clinical trials close to home at UT Southwestern and our partner institutions, as well as potential access to studies across the country,” said Dr. Milton Packer, chairman of clinical sciences at UT Southwestern. “This initiative gives volunteers a tangible way to assist with medical research and make an impact on the future of their community and the world.”
ResearchMatch, which can be accessed through UT Southwestern’s Web site at www.utsouthwestern.edu/researchmatch, is funded by the National Institutes of Health through a grant program called the Clinical and Translational Science Awards (CTSA). It is maintained by Vanderbilt University in Tennessee and currently includes 52 U.S. institutions. UT Southwestern is one of four sites in Texas.
“Recruitment and retention of participants is a huge issue in clinical trials, especially for investigators working with rare diseases or complex protocols, for example where long-term commitment is critical,” said Dr. Blair Holbein, director of the clinical investigator resource core at UT Southwestern and the institution’s liaison with Vanderbilt. “ResearchMatch is an opportunity to cast a wider net into a deeper pool of potential subjects.”
Because it is a research registry and contains personal information, numerous regulations are in place to protect the privacy of volunteers by strictly controlling access to the data.
“All the privacy issues have been addressed thoroughly, including rigorous provisions for protection of volunteers’ personal information,” said Dr. Suzanne Rivera, associate vice president for research services at UT Southwestern.
“An investigator, or anyone else for that matter, can’t just pull private information out of this registry,” she said. “There are gatekeeping mechanisms to make sure the information is used only for legitimate projects under careful oversight. Each research project in the database must first be approved by a review board from the investigator’s home institution, which is a very thorough process designed to protect the rights and welfare of the volunteers.”
Here is how ResearchMatch works:
Interested adult volunteers, parents or caregivers register on the ResearchMatch Web site (www.researchmatch.org) and indicate their interest in participating in research studies. Both healthy volunteers and those with specific medical conditions can sign up.
Beginning in January, researchers at UT Southwestern and other partnering institutions will submit information to the Web site’s database about their studies and clinical trials and their need to recruit and enroll volunteers. Researchers across the country will then search the registry for potential volunteers that fit the criteria for their specific study ? including any limits on geographic region ?and will send a recruitment message to those people with more information about the study.
At that point, it’s up to the volunteer to affirm whether the researcher can contact them directly. If agreed upon, the volunteer then becomes “visible” to the researcher, and the enrollment process continues directly between the researcher and the volunteer.
In 2007 UT Southwestern received a $34 million CTSA grant from the NIH to lead a wide-ranging collaborative initiative aimed at speeding the transfer of laboratory discoveries to new therapies that improve human health. That five-year grant established the North and Central Texas Clinical and Translational Science Initiative (NCTCTSI). The UT Southwestern-based collaboration includes several regional academic institutions, hospitals and community partners, who also will be able to participate in ResearchMatch.
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Dr. Milton Packer — www.utsouthwestern.edu/findfac/professional/0,2356,67302,00.html
