Lupus Clinical Trials: Increasing Diversity
Therapeutics and medical devices are safer and more effective for everyone when clinical research includes diverse populations that reflect race/ethnicity of people living with the disease. Inclusion of a representative population leads to results that are generalizable to the population living with the disease. This approach also promotes equitable outcomes and social justice. Data from representative trials also accounts for variations in social/medical experiences, environment and responses to medications that could potentially inform real-world, clinical utility and guidelines.
Trusted professionals like nurses can help educate patients about lupus research and increase clinical trial enrollment among lupus patients from racial and ethnic minority populations.
have been developed specifically for lupus and approved by the FDA
but only 14% of clinical trial participants.
Among Black and Hispanic females, SLE ranks 5th in the 15–24 years, 6th in the 25–34 years, and 8th–9th in the 35–44 years age groups as the cause of death. Source
Here’s how nurses can help increase diverse participants in clinical trials!
Take the continuing nursing education (CNE) course Lupus Conversations: Let’s Talk About Lupus, Clinical Trials, and Race (1.5 CNE hours)
The CNE accredited session discusses barriers and equips nurses with information and resources to help you facilitate participation in clinical trials among racial and ethnic minority groups.
The course is designed to meet the educational needs of rheumatology nurses, nurse practitioners, and physician assistants. Other healthcare providers may also participate.
Nurses Advancing Lupus Research
Here are some ways you nurses can help increase clinical trial enrollment among racial and ethnic minority populations:
- Understand and support the importance of diversity in lupus clinical trials
- Recognize barriers in clinical trial enrollment
- Educate patients about clinical trials and local opportunities
- Use culturally appropriate communication
- Advocate for patients by speaking with the physician about clinical trial opportunities
This course is available online, free of charge until April 20, 2024.
Watch the Lupus Conversations for Nurses Video: A Culturally Congruent Approach to Educating People with Lupus About Clinical Trials
At the conclusion of this learning module, you will be equipped to engage with your patients about:
- What a clinical trial is, and what it means to participate
- The importance of diversity in clinical trials
- Resources for patients to better understand and encourage participation in clinical trials
Share Research Opportunities With Your Lupus Patients
Antidote and ClinicalTrials.gov are just a couple ways you can search for Clinical Trials near your patient.
Research Accelerated by You (RAY®): Through RAY, patients and their caregivers can learn about research opportunities. Participants can also share information about their lupus experience to help researchers accelerate the development of new treatments and improve disease outcomes.
Share Resources With Your Colleagues and Patients
- Lupus Foundation of America Health Educators, available for you and your patients
- Listen to the podcast episode The Expert Series: Participating in Clinical Trials
- Find clinical trials near you
- Resources for healthcare professionals on continuing medical education
- Learn about the clinical trial outcome measures used in lupus clinical trials
Additional Academic Resources
- Community-Engaged Research: Leveraging Community-Academic Partnerships to Reduce Disparities and Inequities in Lupus Care
- Using Critical Race Theory to Understand Trial Participation Among Black Individuals with Systemic Lupus Erythematosus: A Qualitative Study of Patients and Caregivers
- Widening Disparities Among Patients With Rheumatic Diseases in the COVID-19 Era: An Urgent Call to Action
- Implementation and dissemination of an African American popular opinion model to improve lupus awareness: an academic-community partnership
- Factors Associated With Participation in Rheumatic Disease-Related Research Among Underrepresented Populations: A Qualitative Systematic Review
The Lupus Conversations Let’s Talk About Lupus, Clinical Trials, and Race module and Lupus Conversations for Nurses Video: A Culturally Congruent Approach to Educating People with Lupus About Clinical Trials were funded by the Department of Health and Human Services, Public Health Service, Office of Minority Health Grant #1 CPIMP171141-01-00 and #1 CPIMP18116801-00
The Lupus Foundation of America would like to thank the following partners for their participation and support in the development of the Lupus Conversations program: Rheumatology Nurses Society, Rosalind Ramsey-Goldman, MD, DrPH (Northwestern University) and, Rodlescia Sneed, PhD, MPH (Wayne State University).