SMA Dataset Project Manager

Faculty of Humanities & Social Sciences

Newcastle University, Newcastle upon Tyne, UK


  • Posted on: 23rd Feb 2021
  • Salary: £30,942.00 - £32,817.00
  • REF: 5905
  • Closes: 09th March 2021
  • Contract Type: Permanent
  • 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: £30,942.00 – £32,817.00

Closing Date: 9 March 2021

You will join a dynamic, international, multidisciplinary team working in the area of translational research for neuromuscular diseases and other rare disorders within the John Walton Muscular Dystrophy Centre at the Institute of Genetic Medicine.

Educated to a degree level (or equivalent) you will facilitate development and collection of an expanded core dataset for the Global SMA (Spinal Muscular Atrophy) Registries.

You should have experience of project management, in particular liaising, co-ordinating and communicating with internal and international stakeholders. You will take overall responsibility for managing this project and will work with a diverse group of international stakeholders to generate and maintain consensus and deliver tangible results to agreed project timelines.

This role requires excellent organisational and networking skills with the ability to work independently and manage a diverse workload. High level written and verbal communication skills are essential. Recent experience of managing data and budgets will also be required.

The post is full time and is tenable until 31 May 2022.

Informal enquires should be directed to Jo Bullivant (



The Role

The purpose of this varied and challenging post is to facilitate development and collection of an expanded core dataset in the Global SMA (Spinal Muscular Atrophy) Registries, in order to support post-marketing data collection for emerging SMA therapies. You will project-manage and take overall responsibility for establishing, managing and coordinating this project and will work with a diverse group of international stakeholders to generate and maintain consensus and deliver tangible results. This will include reporting on agreed deliverables to meet funder requirements.

Key Accountabilities

Implement, manage and maintain efficient patient registries

  • Take overall responsibility for managing the SMA Dataset project
  • Establish and manage overall tasks, timelines and major milestones for the project, including meetings, training, protocol development, data dictionaries, analysis planning, and reporting
  • Document each site’s capacity to collect the dataset by assessing personnel time and expertise, licenses, time required for necessary approvals, means of data collection, reporting, anticipated number of patients, and longitudinal capacity
  • Ensure the smooth running of the project and organise related meetings to ensure that key deliverables outlined in the grant agreement are met
  • Ensure that each site’s information is correctly researched, collated, and validated with plans for long term harmonised data collection, including the identification of tasks, timelines, and major milestones.
  • Offer input into the resource planning process to ensure finances are appropriately and efficiently managed.
  • Manage and track the development of project progress by collecting data on dataset compliance and patients enrolled. Organise internal and external activities/events efficiently to progress the project.
  • Enhance international relations and collaborations between SMA Registries and other related initiatives.

Curate the Collection of SMA Dataset Project data

  • Oversee and maintain the SMA core dataset for implementation in the Global SMA Registry.
  • Assist registry curators in the process as required and answer their registry-specific questions relating to the project.
  • Keep the project records up to date, sending and following up on annual update reminders.
  • Provide regular feedback to the TREAT-NMD Global Data systems Oversight Committee (TGDOC) about project progress and other related information.
  • Work with the sites to establish plans for long term harmonised data collection, including the identification of tasks, timelines, and major milestones for data collection.
  • Liaise regularly with others in similar roles or with similar responsibilities (including other registry curators)
  • Present the dataset project at relevant meetings and conferences, and write related reports.

Communication and dissemination

  • Work with patient organisation stakeholders to develop and deliver the project, keeping all stakeholders informed
  • Take advantage of the global links of the TREAT-NMD coordination office to provide information with an international dimension and added value for SMA stakeholders.
  • Take advantage of the availability of the Newcastle clinical team (the consultants and also the care team including physiotherapists and genetic nurse specialists) to provide advice about medically reliable information within the dataset
  • Act as a point of contact for registry curators within the dataset project who have questions about the data elements.
  • Promote the core dataset among clinicians and geneticists to encourage future involvement.

Strategic planning and implementation

  • As part of the JWMDRC and SMA project team, represent the SMA registries and play a part in the embedding of best-practice within the registry network.
  • Liaise with other charities working with TREAT-NMD to maximise synergies when working on lobbying and implementation activities.
  • Work with researchers to promote the use of TREAT-NMD resources including applications to the TREAT-NMD Advisory Committee for Therapeutics to assess the readiness of a drug for clinical trial, access to biobank resources, the global registry, outcome measures expertise, animal models SOPs etc.
  • Represent the registry curators within the international neuromuscular field, providing an interface with international SMA initiatives to ensure representation in these initiatives and looking for opportunities to harmonise activities to avoid duplication of effort.

The Person (Essential)

Knowledge, Skills and Experience

  • Experience of working with industry, preferably pharmaceutical industry
  • Experience of working with patient organisations, preferably rare disease patient organisations.
  • Knowledge of neuromuscular disease research
  • Management qualification
  • Relevant Good Clinical Practice (GCP) qualification
  • Take responsibility and prioritise workloads
  • Work independently with minimal supervision
  • Work to agreed targets and strict deadlines
  • Use initiative to think strategically, contribute to policy debates and adopt an active approach to problem solving
  • Excellent written and verbal communication skills
  • Excellent interpersonal and negotiation skills; confident, adept and empathetic communicator in a variety of media
  • Excellent team-working skills
  • Excellent numerical and analytical skills including budgetary skills
  • Excellent presentation skills
  • Excellent project management skills
  • IT literate across a wide range of applications
  • Understanding of basic science and translational research issues relating to neuromuscular diseases
  • Understanding of the issues surrounding care for neuromuscular disorders and/or rare diseases
  • Project Management
  • Handling complex projects to deadlines
  • Acting in an advisory capacity to colleagues at all levels
  • Networking and dissemination work
  • Managing complex interpersonal situations
  • Communicating sensitive personal information
  • Managing and organising conferences, meetings, and other events, including programme development and delivery at a national and international level
  • Communicating with patients and families
  • Dealing with complex scientific data.
  • Working in an academic, clinical, healthcare, patient-oriented or pharmaceutical environment

Attributes and Behaviour

  • Has the ability to see the “big picture”, to think strategically and to manage complex problems and issues.
  • Uses clear, concise and accurate communication, tailoring the approach accordingly and encouraging a two way communication process.
  • Works collaboratively with others, plays a positive role in teams and establishes and grows relationships across the organisation where different skills, expertise and opinions are valued.
  • Manages time and resources by prioritising and organising effectively.
  • Ability to undertake national and international travel with overnight stays when required
  • Ability to undertake work outside of normal working hours on an occasional basis
  • Innovative and flexible in approach


  • Degree qualification in a relevant discipline or equivalent relevant senior experience.

Newcastle University is committed to being a fully inclusive Global University which actively recruits, supports and retains staff 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.

Requisition ID: 5905

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