Rare disease clinical trials often under-represent patients from socioeconomically deprived and ethnic minority groups, leading to disparities in trial access and health outcomes. Barriers to participation include digital poverty, geographical isolation, cultural factors such as consanguinity, and language differences. Addressing these systemic challenges is essential to ensuring that research is inclusive and that all rare disease patients have equitable opportunities to benefit from clinical advancements.
Our approach will focus on improving trial participation among underserved communities by embedding equality, diversity, and inclusion (EDI) principles throughout the Accelerating Rare Disease Trials (ARDT) programme. This includes designing trials that minimise participation burdens, implementing targeted engagement strategies, and working towards the equitable implementation of research findings.
By fostering a more inclusive research culture, this work will enhance representation in clinical trials, improve access to innovative treatments, and help ensure that all rare disease patients receive the highest standard of care, regardless of background or circumstances.
This Work Package has developed the draft EDI Strategy, in consultation with the WPB working group, the ARDT Research Culture group and other stakeholders across the centre. The strategy will help provide a framework for embedding EDI principles across the centre, highlighting areas of success, identifying where efforts are further required and making recommendations for action where appropriate.
You can access the EDI strategy here
We are always looking for talented researchers, clinicians, and industry partners to join our efforts in accelerating rare disease trials. Whether you’re interested in research collaboration, clinical trial design, or patient engagement, we’d love to hear from you.
