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.
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.
LifeArc is a self-funded medical research charity. We take science ideas out of the lab and help turn them into medical breakthroughs that can be life-changing for patients. We have been doing this for more than 25 years and our work has resulted in five licensed medicines, including cancer drug pembrolizumab (Keytruda®), lecanemab for Alzheimer’s (Leqembi), and a diagnostic for antibiotic resistance.
Our teams are experts in drug and diagnostics discovery, technology transfer, and intellectual property. Our work is in translational science – bridging the gap between academic research and clinical development, providing funding, research and expert knowledge, all with a clear and unwavering commitment to having a positive impact on patient lives.
Find out more about our work on www.lifearc.org or follow us on LinkedIn or X.
The opinions and interpretations presented on this website are those of the authors and not LifeArc’s.
Newcastle University
Newcastle upon Tyne
Tyne and Wear
NE1 7RU
United Kingdom
The Centre is funded by LifeArc. LifeArc is a company limited by guarantee (registered in England and Wales under no. 2698321) and a charity (registered in England and Wales under no. 1015243 and in Scotland under no. SC037861).
