Peer Support

The importance of patient engagement in clinical trials cannot be overstated – for study sponsors and for people with lupus. As a patient-first organization, we are consistently looking for new ways to bring the voice of the community into all aspects of clinical research. And we are especially attuned to the need for greater demographic diversity in clinical trial participation.

Engaging diverse patients in clinical trials

It is also well established that treatments can affect people differently and must be tested among each potential patient group— by race, gender, age, and ethnic background— so that healthcare professionals have the data to use therapies safely and effectively. This is especially important for people of color including African Americans, Hispanics, Asians and Native Americans, who are disproportionately affected by lupus.

Lupus Therapeutics provides patient engagement consultation services that draw on our expertise in designing lupus clinical trials as well as our deep connection with the Lupus Research Alliance and pioneering work engaging a diverse group of patients. We place the patient in the center of how we think about every aspect of clinical trials, from defining protocols, optimizing recruitment, and advising on site resources.

Introducing PALS,
a unique peer-to-peer education program

Lupus Therapeutics is building the first-ever Patient Advocates for Lupus Studies or PALS, a visionary pilot peer-to-peer clinical trials education program created by Lupus Therapeutics and the Lupus Research Alliance to improve clinical trial awareness, knowledge, and enrollment, with a specific focus on making sure diverse populations are well-represented in trials.

The goals of the PALS program are to:

PALs, all of whom have been diagnosed with lupus and participated in clinical trials, receive formal training in basic lupus terminology, the clinical research process, and the importance of representative patient participation in clinical trials so they can address patient questions.

As the effectiveness of the PALS program is documented, our goal is to expand the program to more LuCIN centers. We plan to work with the LuCIN investigators to recruit additional individuals with clinical trial experience to serve as PALS so we can extend the resource to more lupus patients throughout North America.

Five academic medical centers in the United States that serve diverse populations were selected to pilot the PALS program:
Five academic medical centers in the United States that serve diverse populations were selected to pilot the PALS program: