Registry Programme Manager Curator

Implement, manage and maintain an efficient patient registry

• Take overall responsibility for managing the patient registry
• Provide a coordinated and efficient registry service to the various stakeholders, including patient organisations and the pharmaceutical industry
• Ensure the smooth running of the registry's steering committee and organise related meetings
• Ensure that information is correctly researched, collated and validated for inclusion into the database and reports/documents
• Contribute to the resource planning process to ensure finances are appropriately and efficiently managed
• Organise internal and external activities/events efficiently to publicise the registry
• Nurture international relations and collaborations between other registries for limb gridle muscular dystrophies (LGMD)
Curate the registry data
• Ensure that registrations are valid, complete and accurate
• Act as first point of contact to assist patients in the registration process as required
• Obtain genetic information from patients' genetic reports, liaising with patients and clinicians/geneticists where necessary
• Keep registrations up to date by coordinating annual update reminders
• Provide regular feedback to registry participants about research results and other related information
• Act as the interface between the registry and clinical trial sites or sponsors to assist with the recruitment of patients from the registry into clinical trials
• Make registry statistics available for patients by means of newsletters, websites and printed materials
• Analyse registry data to collect information of relevance to healthcare and publish in appropriate forms (including academic publications, reports for use in policymaking initiatives, as well as information for patients)
• Exploit registry data to provide statistical information that might provide an insight into issues such as standards of care
• Respond to and manage enquiries into use of the registry data, including enquiry costing, contracting and delivery
• Liaise regularly with others in similar roles or with similar responsibilities (including other registry curators)
• Present the registry at relevant meetings and conferences and write related reports
Communication and dissemination
• Work with patient organisation stakeholders to develop content for websites and newsletters, authoring content as directed for use in publications and websites
• Utilise the global links of the TREAT-NMD coordination office to provide information with an international dimension and added value for registry participants
• Consult clinical colleagues to produce medically reliable information for patients
• Promote the Global FKRP Registry among clinicians, geneticists and other medical professionals to encourage recruitment
Strategic planning and implementation
• Take ownership of the sustainability of the registry; proactively identifying and leveraging funding streams and opportunities for income generation
• Represent FKRP interests in the TREAT-NMD community
• Liaise with other TREAT-NMD stakeholders to maximise synergies when working on related activities
• Represent FKRP interests within the wider international neuromuscular field, providing an interface with relevant initiatives to ensure registry representation/participation and to identify opportunities for collaboration
  
  Awareness of the benefits and challenges of patient registries, particularly in the rare disease field
• Comprehensive understanding of GDPR requirements and how to apply them in practice
• High level of awareness of how the various stakeholders function; including people affected by FKRP-related conditions, their families, carers and the public; and funders and sponsors of research
• Excellent written and verbal communication skills; confident, adept and empathetic communicator in a variety of media
• Excellent interpersonal and negotiation skills
• Excellent team-working skills
• Excellent numerical and data analysis skills
• Excellent presentation skills
• Excellent project management skills
• IT literate across a wide range of applications
• Ability to take responsibility and prioritise workloads
• Ability to work independently with minimal supervision
• Ability to work to agreed targets and strict deadlines
• Ability to use initiative, think strategically and adopt an active approach to problem solving
• Ability to understand complex scientific and medical information
• Experience in a senior role
• Experience handling complex projects to deadlines
• Experience of acting in an advisory capacity to colleagues at all levels
• Experience of networking and dissemination work
• Experience of healthcare issues related to patients and their families
• Experience managing complex interpersonal situations
• Experience communicating sensitive personal information
• Experience dealing with complex numerical and scientific data
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 occasional international travel with overnight stays when required
• Ability to undertake work outside of normal working hours on an occasional basis, Degree qualification in a relevant or transferable discipline
  
  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., 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 silver 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.