Facilitating Recruitment

Here the project is developing a rare disease recruitment portal, facilitating rapid recruitment to clinical trials by focusing on geographical equity and enhancing accessibility.

Research lead

Prof Volker Straub

Professor Volker Straub is the Director of the John Walton Muscular Dystrophy Research Centre and Deputy Dean for Newcastle University’s Translational and Clinical Research Institute. He is a Consultant in Neuromuscular Genetics and Paediatrics, and an NIHR Senior Investigator. Volker has a long-standing interest in the pathogenesis of genetic muscle diseases, with research involving disease models, the application of imaging technologies, next generation sequencing, and machine learning. He is the current president of the World Muscle Society and an author on over 450 peer-reviewed publications.

University lead

Dr Palak Trivedi – University of Birmingham

Dr. Trivedi is a Consultant Hepatologist who has devoted his clinical and research career to studying immune-mediated and chronic cholestatic liver disease.

Prof. Amy Jayne McKnight – Queens University Belfast

Prof. McKnight is a professor of Molecular Epidemiology and Public Health, focusing on the molecular factors influencing human disease and healthy ageing.

Area Overview

Rare disease clinical trials often face significant challenges in identifying and enrolling eligible participants, leading to delays in delivering new treatments.

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.

Interested in working with the team?

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.