HealthWeb Solutions has been pleased to contribute to a publication in the journal of Pharmaceutical Medicine, titled ‘Increasing Diversity, Equity, Inclusion, and Accessibility in Rare Disease Clinical Trials‘.
ABSTRACT: Diversity, equity, inclusion, and accessibility (DEIA) are foundational principles for clinical trials and medical research. In rare diseases clinical research, where numbers of participants are already challenged by rarity itself, maximising inclusion is of particular importance to clinical trial success, as well as ensuring the generalisability and relevance of the trial results to the people affected by these diseases. In this article, we review the medical and grey literature and cite case examples to provide insights into how DEIA can be proactively integrated into rare diseases clinical research. Here, we focus particularly on genetic diversity. While the rare diseases DEIA literature is nascent, it is accelerating as many patient advocacy groups, professional societies, training and educational organisations, researcher groups, and funders are setting intentional strategies to attain DEIA goals moving forward, and to establish metrics to ensure continued improvement. Successful examples in underserved and underrepresented populations are available that can serve as case studies upon which rare diseases clinical research programs can be built. Rare diseases have historically been innovation drivers in basic, translational, and clinical research, and ultimately, all populations benefit from data diversity in rare diseases populations that deliver novel insights and approaches to how clinical research can be performed.
Baynam, G., Baker, S., Steward, C., Summar, M., Halley, M., & Pariser, A. (2024). Increasing Diversity, Equity, Inclusion, and Accessibility in Rare Disease Clinical Trials. Pharmaceutical Medicine, 38(4), 261-276. https://doi.org/10.1007/s40290-024-00529-8