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

Volker Straub is The Harold Macmillan Professor of Medicine and Professor of Neuromuscular Genetics at the Institute of Translational and Clinical Research at Newcastle University Volker was trained as a paediatric neurologist at the University of Düsseldorf and the University of Essen writing his PhD thesis on Duchenne muscular dystrophy. He has a passion for translational research in rare neuromuscular diseases and is co-director of the MRC International Centre for Genomic Medicine in Neuromuscular Diseases and currently the President of the World Muscle Society.

University lead

Dr Palak Trivedi – 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?

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