Accelerating Trial Delivery

Concentrating on making trials accessible, equitable and supportive throughout, this area will help deliver decentralisation in rare disease trials by addressing needed policy changes in the healthcare system

Research lead

Prof Timothy Barrett

Timothy Barrett is the Leonard Parsons Professor of Paediatrics and Child Health at the University of Birmingham and an Honorary Consultant in Paediatric Endocrinology. He directs the Centre for Rare Disease Studies (CRDS) Birmingham, co-leads the LifeArc Centre for Acceleration of Rare Disease Trials (LifeArc ARDT), and contributes to the GOSH BRC Paediatric Research Network of Excellence. An NIHR Senior Investigator, he has published over 200 research papers on paediatrics, diabetes, and the genetics of childhood diabetes syndromes. His research, supported by major grants from NIHR, MRC, Wellcome Trust, and others, focuses on functional genetics of rare diabetes syndromes, translational research in early-phase clinical trials, and reducing health inequalities in childhood diabetes.

University lead

Prof Dave Jones - Newcastle University

Alongside being the Centre Coordinator, Prof David Jones is the Newcastle centre lead for Patient Reported Outcomes. He is an active researcher in autoimmune liver disease with a focus on improving outcomes through evaluation of new treatments.

Dr Patricia O’Hare – Queen’s University Belfast

Dr O’Hare is the Northern Ireland Paediatric Clinical Lead for rare diseases. With great experience in clinical trials, Dr O’Hare will help drive forward the collaboration of research in bringing effective treatments to patients.

Area Overview

Ensuring that rare disease patients can access clinical trials quickly and equitably is a major challenge in research. This research area focuses on accelerating trial setup, expanding geographically distributed trial sites, and supporting patients and carers throughout participation.

In collaboration with the Trial Design research area, we will implement decentralised trial models, enabling more patients to participate without extensive travel. Additionally, we will introduce a carer support programme to assist patients participating in trials away from home, ensuring a patient-friendly trial experience. This work will also involve policy-level engagement with the NHS and the NIHR Research Delivery Network, updating national research agreements to accommodate low-intensity intervention studies, further broadening trial accessibility. 

By September 2027, we aim to have at least four geographically distributed sites working collaboratively on training and recruitment, setting an exemplar model for rare disease trials. The first decentralised clinical trial is targeted for recruitment by March 2029, ensuring a sustainable, patient-focused trial infrastructure that delivers new therapies more efficiently across the LifeArc Translational Challenge for Rare Disease. 

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.