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Patient Registry Project Manager

Newcastle University

Location: Newcastle upon Tyne
Salary: £31,406 to £33,309 with progression to £40,927 per annum.
Hours: Full Time
Contract Type: Fixed-Term/Contract
Placed On: 9th September 2021
Closes: 23rd September 2021
Job Ref: 11527

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 Northeast of England. Attracting and retaining high-calibre people is fundamental to our continued success.

The Role
We are looking for a talented and motivated individual to join an international, multidisciplinary team working in the area of translational research for neuromuscular diseases. You will project-manage and take overall responsibility for managing and coordinating the UK Myotonic Dystrophy and Facioscapulohumeral Muscular Dystrophy registries and will work with patient organisation stakeholders to develop informational materials for patients and families and manage related communication and dissemination activities in the UK and internationally.

The purpose of this varied and challenging role is to take ownership for the management of 2 UK patient registries, for Myotonic Dystrophy (DM) and Facioscapulohumeral muscular dystrophy (FSHD). 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, financial sustainability, communications, and promotion of the registries for use in translational research. They will also provide managerial or administrative support to other relevant projects as required.

You will be expected to have a degree qualification with relevant experience of networking and managing diverse group of people towards defined goals as well as a proven ability to use initiative and think strategically, motivating people to achieve milestones. Experience of managing dataset quality will also be essential.

This post is full-time, fixed-term for the duration of 2 years.

Informal enquiries may be made to Joanne Bullivant ( or Emma Heslop (


  • Degree qualification (in a related subject).
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