Salary: £32,080 to £33,002 with progression to £34,610 per annum
Newcastle University is a great place to work, with excellent benefits. We have a generous holiday package; plus the opportunity to buy more, great pension schemes and a number of health and wellbeing initiatives to support you.
Closing Date: 04 June 2026
The Role
This is an exciting opportunity to join the world-renowned John Walton Muscular Dystrophy Research Centre (JWMDRC) at Newcastle University supporting both the Adult SMA REACH project and Patient Registry Team.
Adult SMA REACH is an NHS sponsored academic observational study, collecting clinical data and outcome measures from adult Spinal Muscular Atrophy (SMA) patients. The Registries Team manage a portfolio of national and international neuromuscular disease registries (longitudinal databases collecting genetic and clinical information on affected individuals) and engage with a variety of stakeholders including patient organisations, academia and industry. The postholder will be responsible for data quality and completeness, communications and promotion of both the Adult SMA REACH project and patient registries. They will also provide administrative support to other relevant projects as required.
The role is full time, fixed term until 30 April 2027.
Please reach out to Aleks Carver at aleks.carver@newcastle.ac.uk if you have any questions. If you are successful in your application, you will require a Research Passport before you can commence in the role.
Key Accountabilities
* Act as a point of contact for Adult SMA REACH and Patient Registries and provide administrative support to the Project Managers
* Conduct proactive outreach and utilise social media and promotional material to engage with key stakeholders including patients, clinicians/HCP’s and researchers to raise awareness of the projects and increase recruitment
* Take responsibility for management of the registry mailboxes, providing prompt response to patient queries and undertaking registry data curation to ensure high quality registry data
* Support project governance by handling ethics approvals, coordinating and chairing steering committee meetings, minute taking, 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
* Work with the other members of the registry team in preparing and managing website content, training courses and newsletters to ensure the most up to date information is available for stakeholders
* Support the project managers with a range of data curations activities, including data cleaning and assisting with new patient registrations
* Actively contribute to 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.
* Proactively and independently provide suggestions and advise on issues related to both projects and relevant to the programme of work
* Analyse data to support annual report writing, publications, grant applications, newsletters and other outputs as required
* Take responsibility for identifying own learning needs
* Other duties include occasional national and international travel as required
The Person
Knowledge, Skills and Experience
* Experience of communicating effectively with colleagues and stakeholders from different backgrounds and levels of expertise
* Excellent written skills and close attention to detail
* Good interpersonal and negotiation skills
* Excellent organisational skills and the ability to prioritise workload to meet demanding targets and deadlines
* Demonstrable competence in planning, project and task management
* Ability to evaluate effectiveness of processes and suggest/implement improvements
* Knowledge of data protection regulation and Caldicott principles
* Competent user of MS office products and online learning management systems
* Proven ability to work independently on agreed tasks
Attributes and Behaviour
* Ability to work to tight deadlines with a high level of accuracy
* Excellent problem solving with ability to use own initiative
* Highly organised with excellent attention to detail
* Reliable and professional at all times
* Team player, able to develop and maintain productive working relationships with multi-disciplinary colleagues and project members
* A high level of sensitivity and professionalism, especially in communicating with rare disease patients and their families
* Flexible approach to working patterns which will include working outside of normal office hours from time to time and some national and international travel
Qualifications
* Degree qualification in a relevant or transferable discipline or equivalent experience
Newcastle University is a global University where everyone is treated with dignity and respect. As a University of Sanctuary, we aim to provide a welcoming place of safety for all, offering opportunities to people fleeing violence and persecution.
We are committed to being a fully inclusive 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 of our employees and the communities they represent. We are proud to be an equal opportunities employer and encourage applications from individuals who can complement our existing teams, we believe that success is built on having teams whose backgrounds and experiences reflect the diversity of our university and student population.
At Newcastle University we hold a Gold Athena Swan award in recognition of our good employment practices for the advancement of gender equality. We also hold a Race Equality Charter Bronze award in recognition of our work towards tackling race inequality in higher education REC. We are a Disability Confident employer and will offer an interview to disabled applicants who meet the essential criteria for the role as part of the offer and interview scheme.
In addition, we are a member of the Euraxess initiative supporting researchers in Europe.
Requisition ID: 29393