Staying Connected

The Lupus Foundation of America is connecting lupus patients with local clinical trials through a new registry.

People with lupus nationwide can now sign up to be notified of local clinical studies enrolling volunteers through the Lupus Foundation of America's Center for Clinical Trials Education.

The LFA's Lupus Research Registry, through the CCTE, uses information provided by the registrants to help connect them to local clinical studies. The Lupus Research Registry is part of the LFA's ongoing efforts to advance the medicine and science of lupus and further the discovery of safe, effective, and more tolerable treatments for lupus.

The LFA is committed to bringing down barriers that have impeded progress in lupus research. In recent years, the number of clinical trials for potential new lupus treatments has risen, increasing the demand for volunteers. The Lupus Research Registry provides a valuable tool for people with lupus to learn about opportunities to participate in a clinical study. The Registry also helps clinical investigators connect with potential participants for various types of studies, such as the genetic origins of lupus and new procedures used to monitor the disease and response to treatment.

“We continue to receive more requests from clinical investigators for people with lupus to serve as study volunteers and we know that it is only through increased participation that we will continue to move toward having a full arsenal of treatments needed for a disease as diverse and complex as lupus,” said Sandra C. Raymond, president and CEO of the Lupus Foundation of America, in a press release. “The LFA's Lupus Research Registry will make the link between the trials and potential participants stronger; ensuring the community is informed and engaged in the quest for new treatments, and ultimately a cure.”

The LFA first launched the CCTE in 2008 and with the addition of the Lupus Research Registry it is now positioned to meet a growing need for clinical research participation. This is a result of greater interest from the pharmaceutical and biotechnology industry in developing new therapies for lupus. Individuals interested in joining the LFA's Lupus Research Registry can do so by completing a simple online form.

The LFA is a national nonprofit voluntary health organization dedicated to finding the causes of and cure for lupus and providing support, services and hope to all people affected by lupus, according to the website.

The LFA, established in 1977, pursues its mission through five program objectives: provides direct financial support to researchers through LFA's own national research program; brings down the barriers; advocates for increased public and private sector support for research on lupus;

translates research findings into medically sound information and programs for people with lupus, their families, physicians, and other health professionals; heightens public awareness of the impact of lupus; and supports individuals with lupus, their families and caregivers.