Research Associate

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The Role
The LifeArc Centre for Acceleration of Rare Disease Trials (ARDT) brings together a consortium of three universities from across the UK: Newcastle University, Queen's University Belfast, and University of Birmingham. This role as a post-doctoral Research Associate will be based in Newcastle at the John Walton Muscular Dystrophy Research Centre (JWMDRC), and work with colleagues across the consortium to deliver research as part of the Equality, Diversity and Inclusion (EDI) work-package. The post-holder will ensure EDI is embedded throughout the LifeArc Centre for ARDT in accordance with the ARDT EDI Strategy.

Patients with rare diseases with characteristics associated with inequality and disadvantage (e.g. those experiencing socio-economic barriers or are ethnically minoritised) are consistently under-represented in clinical trials, contributing to poorer health outcomes. We aim to address this by undertaking research to better understand the barriers and facilitators to inclusive rare disease research, generating best practice frameworks, and implementing measures that better engage diverse rare disease populations in trial participation, research design, and access to treatments.

Summary of the role:

• Work within the ARDT EDI work-package (WPB) projects and contribute to writing bids.
• Also contribute to the related work of the ARDT PPIE work-package.
• Operate within area of specialism (e.g. conducting systematic evidence syntheses, qualitative data collection and analysis, consensus-generation using Delphi survey and workshops, participatory and equity-focused research methods).
• Analyse and interpret research findings and results.
• Support and develop EDI good practice within the JWMDRC.
• Contribute to generating funding.
• Contribute to public understanding of EDI in a rare-disease context.
• Manage and oversee outreach and engagement activities as part of PPIE, ensuring these have principles of EDI embedded into their planning and delivery.

The ARDT project is establishing a UK-wide rare disease clinical trials platform to enable faster and more efficient delivery of drug and treatment trials. Within the EDI work package, the focus is on (i) conducting research on patient participation in rare disease trials, and (ii) establishing and supporting the involvement of people with lived experience of rare diseases (PLERD) across the project. Working closely with colleagues, EDI and PPIE experts at Birmingham University and Queen's University Belfast, as well as patient advocacy organisations such as Genetic Alliance UK, the team will use qualitative and participatory approaches to identify under-represented groups in clinical research and explore barriers they may face to participation, embedding co-design and co-production in all aspects of the Centre's work. You will be based in the John Walton Muscular Dystrophy Research Centre within the Translational Clinical Research Institute of Newcastle University, joining an interdisciplinary team led by Cathy Turner, Victoria Hedley, and Professor Dave Jones, with strong links to the ARDT's Patient and Public Involvement and Engagement (PPIE) activities.

This post is 0.8 FTE (four days per week) fixed-term for a period of 24 months from the start date.

For informal enquiries contact: Catherine.Turner@ncl.ac.uk.

This post will be subject to a Disclosure and Barring Service (DBS) check.

Find out more about the Faculty of Medical Sciences here: https://www.ncl.ac.uk/medical-sciences/.

Find out more about our Research Institutes here: https://www.ncl.ac.uk/medical-sciences/research/institutes/.

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