Why Diversity in Clinical Trials Matters for Autoimmune Disease

Autoimmune diseases like lupus, rheumatoid arthritis, and multiple sclerosis affect over 23 million people in the U.S.—and the vast majority are women, especially women of color [1]. Yet, the clinical trials that test treatments for these conditions often do not reflect the diversity of the patients living with them. That needs to change.

Why Inclusion Is Essential

Many autoimmune and inflammatory conditions behave differently across racial, ethnic, and gender lines. For example, Black women are two to three times more likely to develop lupus than white women, and they tend to experience more severe symptoms [2]. Hispanic and Indigenous populations also face higher risks of autoimmune diseases such as systemic sclerosis and type 1 diabetes [3].

But if most clinical trials only enroll white participants, researchers miss out on learning how treatments work across all populations. This can lead to ineffective—or even harmful—recommendations for underrepresented groups.

What We Risk Without Representation

When people of color, women, or people with complex chronic illness histories are left out of trials, several issues arise:

• Delayed diagnosis: If the research doesn’t reflect diverse presentations, many patients may be misdiagnosed or overlooked [4].

• Ineffective treatments: Medications that work well in one group may not work—or may work differently—in another [5].

• Worsening health disparities: Lack of inclusion in research contributes to poor health outcomes, especially for underserved communities [6].
  

What Better Trials Look Like

Diverse clinical trials don’t just mean checking a box. They mean:

• Designing studies that reflect real-world diversity (age, gender, race, location, disease severity)

• Translating materials into other languages and removing medical jargon

• Hiring diverse research staff who reflect the communities they serve

• Partnering with community leaders and trusted messengers to build trust [8][9].
  

Why It Matters for IMIDs

Inflammatory and autoimmune diseases (IMIDs) are deeply personal—and often life-altering. But the way a disease presents, progresses, and responds to treatment can vary dramatically across populations. For example:

• African American patients with lupus have a higher risk of kidney damage (lupus nephritis) [10]

• Some Indigenous populations are diagnosed with rheumatoid arthritis at younger ages and with more aggressive progression [11]

• Asian patients with inflammatory bowel disease may metabolize certain drugs differently, affecting treatment outcomes [12]

These insights should inform care—but they only will if we design research that includes everyone.

What We Can Do

At IMIDeology, we are committed to closing the gap. That means:

• Advocating for broader inclusion criteria in trials

• Partnering with researchers who prioritize equity

• Educating our community about research opportunities

We believe that everyone deserves to be seen, heard, and represented—especially when it comes to health.

References

[1] National Institutes of Health. "Autoimmune Diseases Research Plan."

[2] CDC. "Lupus and African-American Women."

[3] American College of Rheumatology. "Disparities in Autoimmune Disease."

[4] Lim, S. S., et al. (2014). "Delay in lupus diagnosis and healthcare utilization."

[5] Bonham, V. L., et al. (2018). "The Role of Race in Clinical Trials."

[6] Williams, D. R., & Mohammed, S. A. (2009). "Discrimination and racial disparities in health."

[7] NIH. "Enhancing the Diversity of Clinical Trial Populations."

[8] George, S., et al. (2014). "Community-based approaches to increasing minority participation in clinical trials."

[9] Fessel, W. J. (1974). "Epidemiology of systemic lupus erythematosus."

[10] Peschken, C. A., et al. (2010). "Rheumatoid arthritis in First Nations people."

[11] Yang, S. K., et al. (2014). "Pharmacogenomics of inflammatory bowel disease in Asians."