CHEST Guidelines-Pulmonary-Arterial-Hypertension

Pulmonary-Arterial-Hypertension_chest

Pdf Summary

The article "Pulmonary Arterial Hypertension: What Rare Diseases Tell Us About Disparities in Disease Registries, Clinical Trials, and Treatment Algorithms” highlights critical disparities in the context of rare diseases like pulmonary arterial hypertension (PAH), especially among communities of color. It emphasizes how these disparities are rooted in the lack of diversity in disease registries and randomized clinical trial (RCT) participation, which are essential for understanding disease epidemiology and developing treatment guidelines.<br /><br />The REVEAL Registry, a significant database in the US, shows a disproportionate number of white participants (72.8%), while Black patients are slightly better represented. However, the representation of Hispanic and Asian/Pacific Islander participants falls short. The article points out similar trends across other registries, highlighting a broader issue with representation.<br /><br />RCTs demonstrate even more significant disparities, with an overwhelming majority of white participants and meager involvement of Black, Hispanic, and Asian patients. Not until the 2021 INCREASE trial did Black patients see relatively higher representation at 21.8%. This skewed representation in trials undermines the validity of current PAH treatment guidelines, as diverse populations may have different responses to therapies.<br /><br />The author suggests several solutions to address this issue, including enhancing access to PAH centers, reducing inherent biases in physician perceptions, providing interpreter services for non-English speakers, and increasing awareness and willingness of minority communities to participate in clinical trials through education. The article concludes by stressing that achieving accurate racial and ethnic representation is crucial for better understanding treatment efficacy and ensuring equitable healthcare for all PAH patients.

Keywords

Pulmonary Arterial Hypertension

rare diseases

disparities

disease registries

clinical trials

treatment algorithms

racial representation

healthcare equity

minority participation

REVEAL Registry