February 1, 2019
Today, Lupus Therapeutics, an affiliate of Lupus Research Alliance, is launching our Patient Advocates for Lupus Studies (PALS) program with a pilot study to determine its effectiveness in increasing awareness of and participation in lupus clinical trials, particularly among diverse populations. The program will pair people with lupus interested in learning about trials with a peer or “PAL” who has lupus, has been in a clinical study, and who has been trained through the PALS program.
PALS was formed to address a pressing issue impeding development of new treatments for lupus. The clinical studies necessary for potential drugs to be tested too often do not have enough participants and lack adequate representation from diverse populations.
Overcoming Obstacles to Lupus Trials
The program aims to overcome some of the main challenges that limit clinical trial participation including not enough awareness about trials, lack of opportunity, and concerns about possible risks of experimental medicines. By providing support from a PAL – a peer who has lupus and has been through a clinical study themselves – people thinking about enrolling will gain greater understanding about how trials work, what the process is really like, and why their participation is so important. The ultimate goal for PALS is to increase participation among people from all ethnic and racial backgrounds so more treatments can be tested and made available to those who need them most.
“Surveys have shown that most people with lupus would think about joining a clinical trial if presented with the opportunity by their physician,” commented Lupus Therapeutics Executive Director Albert Roy. “We believe that giving people a chance to learn more about clinical research with a trusted resource – a PAL who shares the lupus experience — will help make the process easier and less intimidating.”
PAL-in-training Gayle explained why she is excited to take part in the new program. “My motivation in becoming a PAL is having the ability to discuss and encourage lupus patients of color to participate in clinical trials. An informed patient is better able to participate in his/her treatment program and better able to dispel any myths family might have heard.”
Rolling Out PALS in Phases
Lupus Therapeutics teamed up with five medical centers belonging to our national Lupus Clinical Investigators Network (LuCIN) to develop the program and train PALS to be able to help others learn about clinical research. Beginning in May 2019, the pilot program will be conducted in five medical centers within LuCIN that serve diverse populations: Columbia University; University of Mississippi; University of North Carolina, Chapel Hill; Emory University; and Northwestern University. We will let the community know when PALS is officially available.
If the study demonstrates that the PALS program is effective, we will begin expanding it to other LuCIN sites throughout North America.