This research area focuses on overcoming these barriers by developing a Rare Disease Recruitment Portal (RDRP) that connects patients, clinicians, and researchers across the UK. By integrating real-world NHS data, particularly through Secure Data Environments (SDEs), we aim to create a streamlined, equitable recruitment system that ensures trial access regardless of location while maintaining the highest standards of data security and patient confidentiality.
Our approach involves mapping existing patient cohorts, improving trial feasibility assessments, and leveraging data-driven strategies to identify eligible participants efficiently. By working with emerging patient data systems, we can access trusted, anonymised data to support patient recruitment. Collaborations with clinical experts, patient advocacy groups, and regulatory bodies ensure that our methods are patient-centric, ethical, and aligned with national research priorities. Additionally, we will explore our partnership in innovative trial designs, to increase flexibility and efficiency in trial recruitment from the early stages.
By developing a sustainable UK-wide recruitment infrastructure, this research area will help accelerate trial delivery, improve patient engagement, and expand trial opportunities. The integration of data can allow trial ready cohorts by enabling more accurate and secure patient identification, reducing delays and ensuring that those who could benefit most from clinical trials are given the opportunity to participate. Ultimately, our work will help bring life-changing therapies to rare disease patients faster and more efficiently.
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.
