EKR Data Manager

The Rare Kidney Disease ERN ERKNET Data Manager is a critical role that will provide structure and leadership ensuring the accurate recording of clinical information and data across the rare disease ERN ERKNET service.  The Data Manager will be responsible for the collection, validation, analysis and sharing of data to advance research.  

The Data Manager will collaborate and work closely with the National Rare Diseases Office and the Clinical Lead for Rare kidney Disease for national and hospital rare kidney disease surveillance and reporting requirements as well as the provision of ERN ERKNET service activity levels.

ERN ERKNET Data Management and Support  

• Manage all aspects of data management activities, collection, validation, analysis, and data reporting for the rare disease ERN ERKNET service
• Ensure that hospital data bases and renal software are kept updated with precise renal diagnosis
• Responsible for data entry into the rare disease database and ERN ERKNET registry/ERN ERKNET registries
• Responsible for rare disease database maintenance, ensuring they are linked with the relevant ERN ERKNET registry
• Support the ERN ERKNET service to fulfil its contracted requirements on ERN ERKNET patient registration – recruitment, governance, data management
• Support the Clinical Lead/ Co Lead and Care Coordinator to enrol and register patients on the ERN ERKNET Clinical Patient Management System (CPMS) – IT Platform for Clinical Consultations to enable clinical experts to collaborate and consult on patients across the ERN ERKNET network, as required
• Develop a undiagnosed renal registry.
• Complete the ERN ERKNET annual monitoring exercise and reporting process in conjunction with the ERN ERKNET MDT service
• Compile relevant data and documentation to support the Clinical Lead/ Co Lead and Care Coordinator in the ERN ERKNET 5 yearly evaluation process (AMEQUIS)
• Support the ERN ERKNET service in the implementation of ORPHAcodes, the rare disease coding system
• Update information on Orphanet (the rare disease information portal) as relevant to the service
• Work with national Transplant Registry to ensure renal diagnosis are kept up to date and accurate
• Support clinics & MDT meetings, ensuring all the relevant clinical information is collated for review/discussion and collating decisions from MDTs and patient outcomes
• Ensure data privacy and compliance with data protection laws/regulation, e.g. de-identifying patient data, maintenance of recruitment log and obtaining necessary permissions for data use and ethics approval
• Maintain inherited kidney disease master registry

Rare Disease Data Reporting

• Provision of accurate rare disease data and data reporting to support national reporting and surveillance
• Contribute to a national rare disease registry when established
• Streamlining data collection and analysis procedures to ensure fast access to metrics

Quality and Improvement

• In collaboration with the Rare Disease Care Coordinator, develop KPIs, outcome measures and a process for monitoring quality of care and measuring service impact and performance
• Participate in risk management where required and identify areas for improvement
• Contribute to the development and implementation of policies and procedures for effective data handling and management

Qualifications / Experience

Essential

• Significant experience in data management and healthcare informatics (or related field) working in a healthcare environment
• Demonstrate the ability to gather, interpret and manage data using various tools and systems including Power BI and advanced Excel, including Pivot tables
• Knowledge and experience of gathering and interrogating data using various tools and systems, including advanced Excel
• Excellent planning and organisational skills, including using computer technology effectively as relevant to the role
• Experience working in a demanding and challenging multi-disciplinary team environment
• Experience in a role that has involvement dealing with a variety of internal and external stakeholders relevant to the role
• Experience with Microsoft Office Suite

Desirable

• Experience in the preparation and submission of registry data
• Experience in statistical analysis
• Qualification in ICT or data analytics or a related field

Informal Enquiries ONLY to: (Please note NO APPLICATIONS will be accepted via the Informal Email)