One of the biggest challenges in understanding the causes of and new treatments for rare diseases like vasculitis is having enough data to undertake meaningful research.
“Much of what we know about diseases is learned through clinical research – studies in which researchers look into how a disease affects the body,” says Denise Shereff, contact registry administrator at the RDCRN Data Management and Coordinating Center in the University of South Florida’s College of Medicine.
That’s why the Vasculitis Clinical Research Consortium (VCRC) created a contact registry. The database will help inform vasculitis patients about clinical research studies.
“The registry can reduce the time patients spend searching for research studies for which they might be eligible,” she continues. Information from the VCRC Contact Registry will be used for recruitment to research studies directed at improving our knowledge and treatment of vasculitis. “The continued efforts of researchers seek to improve the quality of life for all who are suffering from vasculitis. The work of the researchers cannot occur without the partnership with patients.”
Adding to the challenge of researching vasculitis is patients’ misconceptions about the registry. “People should learn as much as possible about any registry or clinical trial and feel comfortable asking the members of the health care team questions about any step of the process,” Shereff says. “They should read the informed consent and privacy documentation carefully and make sure they understand any risks and protections involved in participating.” Check out the RDCRN Contact Registry page.
Some also are worried about divulging personal medical information online. But the registry requires very little information, only seeking contact information, demographic data and some brief information about the diagnosis (e.g., date of diagnosis). This information not only helps patients affected by rare diseases to connect with researchers who are conducting clinical trials, but it also enables researchers to determine where and what types of research studies are most needed.
“Patients who participate in research make it possible for researchers to find new treatments, create new studies and work for the improvement of all our lives,” Shereff notes. “The VCRC Contact registry is a valuable tool to let people know about clinical research studies in vasculitis. Information is delivered directly to the registrant, and then the registrant can decide whether to contact the research site to join the studies.”