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Patient Registry Project Manager

Faculty of Medical Sciences

Newcastle University, Newcastle upon Tyne, UK


  • Posted on: 09th Sep 2021
  • Salary: £31,406 - £33,309, with progression to £40,927 per annum
  • REF: 11527
  • Closes: 23rd September 2021
  • Contract Type: Fixed-Term/Contract
  • Hours: Full Time

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.

Salary: £31,406 – £33,309, with progression to £40,927 per annum

Closing Date: 23 September 2021

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. Youwill 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 (Joanne.Bulliant@ncl.ac.uk) or Emma Heslop (Emma.Heslop@ncl.ac.uk)

Key Accountabilities

• Take overall responsibility for managing and coordinating the patient registries for DM and FSHD
• Provide a professional, credible and efficient service to registry stakeholders, including patient organisations and the pharmaceutical industry
• Act as a main point of contact for registry participants or other stakeholders
• Conduct proactive outreach in patient, clinical and research communities to raise awareness of the registries and increase recruitment
• Drive and coordinate registry governance and steering committee activities
• Contribute to resource planning and monitor registry budgets to ensure finances are appropriately and efficiently managed
• Take proactive responsibility for registry sustainability by undertaking horizon scanning to identify and pursue opportunities for collaboration, promotion and funding
• Assist participants in the registration and data entry process, checking data for mistakes and plausibility, and pursuing missing or lapsed records
• Liaise with participants and clinicians to obtain genetic reports and extract the necessary information
• Manage registry data in accordance with GDPR and other relevant data protection regulations
• Clean and analyse data to produce or contribute to publications, reports, grant applications, newsletters and other outputs as required
• Disseminate summary data to participants, as well as feedback on the use and impact of their data, research developments and other disease-specific information
• Liaise with research teams, clinical trial sites and trial sponsors to assist with the recruitment of research participants
• Organise internal and external activities and events to publicise the registries
• Contribute to regular meetings of the JWMDRC registries team and other associated projects, to share expertise and best practise
• Present the registry at relevant meetings and conferences
• Maintain and develop registry websites and newsletters, working with patient organisation stakeholders and the JWMDRC clinical teams to ensure content is accurate, appropriate, accessible and engaging
• Ensure that the JWMDRC registries uphold best practice and stay up to date with relevant recommendations or standards
• Engage in relevant networks to enhance relations and collaborations between JWMDRC registries and other groups or initiatives
• Participate in TREAT-NMD global registry activities and projects

The Person (Essential)

Knowledge, Skills and Experience

• Working in a senior role in a collaborative or team environment
• Managing complex projects to strict deadlines
• Acting in an advisory capacity to peers at all levels
• Networking and dissemination activities
• Communicating complex and personal information to patients and their families in a sensitive manner
• Dealing with complex numerical and scientific or genetic data
• Taking full ownership of the progression and delivery of a project to agreed targets
• Balancing and prioritising a demanding workload with minimal supervision.
• Using initiative to think strategically and adopt an active approach to problem solving
• Understanding and analysing complex scientific and medical information
• Delivering clear and engaging presentations
• Excellent interpersonal and negotiation skills; a confident, adept and empathetic communicator in a variety of media
• IT literate across a wide range of applications
• Budgetary management

Attributes and Behaviour

• Undertake national and occasional international travel with overnight stays when required
• Undertake occasional work outside of normal working hours according to the needs of the projects


• Degree qualification (in a related subject)

Newcastle University is committed to being a fully inclusive Global University which actively recruits, supports and retains colleagues from all sectors of society. We value diversity as well as celebrate, support and thrive on the contributions of all our employees and the communities they represent.We are proud to be an equal opportunities employer and encourage applications from everybody, regardless of race, sex, ethnicity, religion, nationality, sexual orientation, age, disability, gender identity, marital status/civil partnership, pregnancy and maternity, as well as being open to flexible working practices.

The University holds a silver Athena SWAN award in recognition of our good employment practices for the advancement of gender equality. The University also holds the HR Excellence in Research award for our work to support the career development of our researchers, and is a member of the Euraxess initiative supporting researchers in Europe.

We understand how important the full employment package is to our colleagues at Newcastle University and we are committed to providing a great range of benefits and discounts for all. You can learn more about what is available here on ourBenefitsWebsite page.

Requisition ID: 11527

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