Equity and Engagement

The importance of engaging diverse patients in lupus clinical research 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 research. And we are especially attuned to the need for greater demographic diversity in clinical trial participation.

Project Change by Lupus Therapeutics
Patient Advocates for Lupus Research (PALs)
Patient Protocol Review Council
Patient Advisory Boards (PABs)
Project Change by Lupus Therapeutics
Patient Advocates for Lupus Research (PALs)
Patient Protocol Review Council
Patient Advisory Boards (PABs)

Centering diversity, equity, and inclusivity in clinical research so those most affected by lupus can best benefit from new treatments.

Project CHANGE by Lupus Therapeutics is a groundbreaking approach that will ensure people of color receive the education and tools needed so that they are well represented in clinical research, empowered to make decisions about research and, receive the best possible support and care when choosing to participate.

The three-year program is being implemented in the following major phases from formation through evaluation and reporting.

Select local communities 

We are establishing a steering committee to select communities to pilot the project as a Lupus Research Collaborative (LRC), which will work with all stakeholders to  tailor a specific Action Plan that fits each of their community’s particular needs.

Implement action plans 

Lupus Therapeutics will fund and provide ongoing assistance to each LRC to implement their intentional Action Plan.

Evaluate each program 

A unique evaluation plan will be implemented to track, understand and evaluate the outcomes, challenges and successes of each LRC so we can learn how to replicate the process in other situations.

Learn more

Centering diversity, equity, and inclusivity in clinical research so those most affected by lupus can best benefit from new treatments.

Project CHANGE by Lupus Therapeutics is a groundbreaking approach that will ensure people of color receive the education and tools needed so that they are well represented in clinical research, empowered to make decisions about research and, receive the best possible support and care when choosing to participate.

The three-year program is being implemented in the following major phases from formation through evaluation and reporting.

Select local communities 

We are establishing a steering committee to select communities to pilot the project as a Lupus Research Collaborative (LRC), which will work with all stakeholders to  tailor a specific Action Plan that fits each of their community’s particular needs.

Implement action plans 

Lupus Therapeutics will fund and provide ongoing assistance to each LRC to implement their intentional Action Plan.

Evaluate each program 

A unique evaluation plan will be implemented to track, understand and evaluate the outcomes, challenges and successes of each LRC so we can learn how to replicate the process in other situations.

Learn more

The PALS program,
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:

  • Increase awareness of the need for and potential risk/benefit of lupus clinical trials among a larger and more diverse population of lupus patients.
  • Increase participation in clinical research that ideally will lead to treatments that improve health outcomes and quality of life for people living with lupus.
  • Increase diversity in clinical trials so study results reflect safety and effectiveness in a range of specific populations affected by lupus.

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:

The PALS program,
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:

  • Increase awareness of the need for and potential risk/benefit of lupus clinical trials among a larger and more diverse population of lupus patients.
  • Increase participation in clinical research that ideally will lead to treatments that improve health outcomes and quality of life for people living with lupus.
  • Increase diversity in clinical trials so study results reflect safety and effectiveness in a range of specific populations affected by lupus.

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:

The Patient Protocol Review Council

The Patient Protocol Review Council is a group established by Lupus Therapeutics to provide patient commentary and feedback to pharmaceutical companies on their lupus clinical research. The Council is meant to provide insight into the study from the perspective of a patient as early as possible, and before the  protocol is finalized. Through the combined early feedback of both key scientific leaders and patients, the goal is to develop a protocol that is both scientifically sound, and is acceptable to the lupus patient population so it easier for participants.

Members of the Lupus Therapeutics Patient Protocol Review Council must apply to and be selected.

Patient Advisory Board (PAB) Services

Patient Advisory Boards (PABs) better incorporate the patient voice, preferences, and community needs in the development of important new therapies. People living with lupus are the one who will ultimately benefit from any new treatment, and we believe their insight should be sought as early as possible. Lupus Therapeutics understands that to be patient centric you must co-create with patients and having a PAB for clinical trials moves the drug development process in that direction.

PABs can be conducted as a one-time service to address one question, or ideally, they can be formed as a council and serve for the duration of a study.  PABs can be conducted both virtually and in-person. Lupus Therapeutics has the capabilities to recruit, manage contracting and screening, reporting feedback and serving as a conduit between PAB members and research organizations.

Our PABs provide valuable feedback on many aspects of clinical trials and research, including:  

Are you a patient interested in getting involved in research?

There are many ways you can make a difference by getting involved in research, from participating in advisory boards, to exploring clinical trials and to helping ensure the voices of those who will benefit from research is front and center.

Learn more