Project Coordinator

Company description:

We are a world class research-intensive university. We deliver teaching and learning of the highest quality. We play a leading role in economic, social and cultural development of the North East of England. Attracting and retaining high-calibre people is fundamental to our continued success.

Job description:

The Role

This is an exciting opportunity to join the world-renowned John Walton Muscular Dystrophy Research Centre (JWMDRC) at Newcastle University working across the Adult SMA REACH project and UK SMA Patient Registry. Adult SMA REACH is an NHS sponsored academic observational study, collecting clinical data and outcome measures from adult Spinal Muscular Atrophy (SMA) patients.

You will work across the UK SMA Patient Registry and Adult SMA REACH project, acting as the interface between both initiatives to support data sharing between the UK SMA Patient Registry and SMA REACH neuromuscular clinics. You will be working within a team who manage a portfolio of neuromuscular disease registries (longitudinal databases collecting genetic and clinical information on affected individuals) and engaging with a variety of stakeholders including patient organisations, academia and industry.

You will be responsible for data quality and completeness, communications, and promotion of both the UK SMA Patient Registry and Adult SMA REACH project for use in translational research. You will also provide administrative support to other relevant projects as required.

Please reach out to Jess Page at Jess.Page@newcastle.ac.uk if you have any questions.

The role is fixed term for 19 months.

Please note that if you are successful to this role, you will require a Research Passport before you can commence in the role.

Key Accountabilities

• Act as the main point of contact for Adult SMA REACH and UK SMA Patient Registry projects
• Take overall responsibility for coordinating both projects
• Conduct proactive outreach in patient, clinical and research communities to raise awareness of the projects and increase recruitment
• Manage project governance by handling ethics approvals, coordinating and chairing steering committee meetings, recording minutes, and distributing updates to members
• Communicate with SMA REACH clinic sites on behalf of the UK SMA Patient Registry with regards to patient registration and completion of patient-reported outcome measures (PROMs) in the online Patient Registry
• Contribute to regular meetings of the JWMDRC registries team and other associated projects, to share expertise and best practise
• Work collaboratively and liaise effectively with internal and external partners including the JWMDRC staff involved in the projects, the external collaborators and the funders of both projects
• Work with the other members of the staff in preparing and managing the content of the projects websites, training courses and Newsletter to ensure the most up to date information is available for stakeholders
• Proactively and independently provide suggestions and advise on both projects related issues relevant to the programme of work
• Collate, clean, and analyse data to support annual report writing, publications, grant applications, newsletters and other outputs as required
• To provide administrative support when needed and directed by line manager
• Take responsibility for identifying own learning needs
• Other duties include occasional national and international travel as required

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