The State of Lupus Clinical Trials: Minority Participation Needed.
Saira Z SheikhNicole I WantyJoncel StephensKristen D HoltzSheryl McCallaPublished in: Journal of clinical medicine (2019)
In the United States, the reported prevalence of lupus is 100,000 to 500,000 patients. Lupus disproportionately affects minority populations, including African Americans and Latinos, and the associated health disparities are substantial. Women are at a higher risk of lupus than men and lupus prevalence is the highest in African Americans and Latinos compared to non-Hispanic whites. African Americans and Latinos also have increased disease symptom severity, experience more lupus-related complications, and have a two- to three-fold mortality rate compared to non-Hispanic Whites. Lupus clinical trials offer opportunities for quality care and can result in new treatment options, but African Americans and Latinos are underrepresented in clinical trials because of substantial patient- and provider-side barriers. In conjunction with the limited knowledge of clinical trials that potential participants may have, the healthcare staff approaching participants have limited time to adequately educate and explain the aspects of clinical trials. Indeed, ninety percent of clinical trials fail to meet their recruitment goals on time, so a multi-faceted approach is necessary to address the issue of low minority participation in clinical trials.
Keyphrases
- clinical trial
- systemic lupus erythematosus
- disease activity
- healthcare
- phase ii
- risk factors
- open label
- double blind
- phase iii
- study protocol
- physical activity
- public health
- primary care
- mental health
- palliative care
- cardiovascular disease
- ejection fraction
- coronary artery disease
- pregnant women
- newly diagnosed
- adipose tissue
- type diabetes
- pain management
- risk assessment
- prognostic factors
- quality improvement
- chronic pain
- metabolic syndrome
- climate change
- pregnancy outcomes
- affordable care act