Job Title : Data Managers - Grade V
Reference No : 06.028(2025)
Department / Directorate : Research Department / CEO Directorate
Reports to : Clinical Lead / Co Lead on the Rare Disease Programme of Work & The Head of Research
Tallaght University Hospital (TUH) is one of Ireland’s largest acute teaching and learning hospitals, with adult, psychiatric and age-related healthcare on one site. The Hospital has 472 inpatient adult beds, 74 onsite day beds for Dialysis, Oncology, Infusion, Haematology, Cardiology, Bone & Joint and minor surgery services. The Hospital also has a Day Surgery Centre located near the Hospital which has four theatres and 25 bays for elective surgery. There are an additional 61 offsite beds under its governance. The Hospital is staffed by over 4,000 people with 64 different nationalities represented on the team.
Rare diseases are those affecting less than 1 in 2,000 people. There are over 10,000 rare individual diseases that together affect approximately 300,000 people in Ireland. While it is vital that accurate diagnosis is facilitated by specialists with expertise in the diagnosis and management of rare conditions, some diseases are so rare that the necessary knowledge might not be available in the patient’s nearest health centre or country, particularly in small island nations like Ireland.
In 2017, a number of European Reference Networks (ERNs) were launched connecting more than 900 healthcare units across 26 countries within the EU, to improve access to expertise in rare, complex diseases and thereby improve healthcare quality, reduce inequalities of access, and increase medical expertise across the EU. Since 2022, Tallaght University Hospital has been a recognised site of expertise and full member of ERN-RND (Rare Neurological Diseases), ERN-RITA (Rare Immunological Disorders) and ERN-GUARD-Heart (Rare and Low Prevalence Complex Diseases of the Heart). Patients with these rare disorders can now expect to receive coordinated, patient-centred care from diagnosis to treatment and follow-up, and to be part of a European Network that sets the standard for care and ensures excellence in all facets of the rare disease care pathway.
The Hospital is a provider of local, regional and national specialties. It is a designated trauma unit incorporating the National Pelvic and Acetabular Unit, a national Urology Centre and the second largest provider of renal dialysis services in the country.
One of the two main academic teaching hospitals of Trinity College Dublin - TUH specialises in the training and professional development of staff in areas such as Medicine, Nursing, Health & Social Care Professionals, Emergency Medicine and Surgery, amongst many others. TUH is part of the Dublin Midlands Hospital Group which serves a population of over 1.2 million across seven counties.
The Hospital is an exciting and dynamic place to work, in the midst of implementing a new hospital strategy, the team have already delivered on the opening of a new Renal Dialysis unit, Reeves Day Surgery Centre, a step-down facility in the community, a new ICU and the development of a supraregional Endometriosis Service. It is an exciting time to join the TUH team and one of Ireland’s main teaching hospitals with so many plans to enhance patient care. The Hospital believes in investing in their team and offers excellent education and research opportunities.
TUH Vision and Values
The vision of the Hospital is “People Caring for People to Live Better Lives” through excellent health outcomes supported by evidenced based practice, positive patient and staff experience in an empowering and caring environment. A culture of innovation and quality improvement in everything we do.
Our TUH CARE values – for patients, their families, our community and staff are :
- C ollaborate – together and with our academic and care partners
- A chieve – our goals, positive outcomes and wellbeing
- R espect – for patients, each other and our environment
- E quity – for patients and staff
- Manage all aspects of data management activities, collection, validation, analysis, and data reporting for the rare disease ERN service across the RITA-Ireland sites
- Responsible for data entry into the rare disease database and ERN registry / ERN registries
- Responsible for rare disease database maintenance, ensuring they are linked with the relevant ERN registry
- Support the ERN service to fulfil its contracted requirements on ERN patient registration – recruitment, governance, data management
- Support the Clinical Lead / Co Lead and Care Coordinator to enroll and register patients on the ERN Clinical Patient Management System (CPMS) – IT Platform for Clinical Consultations to enable clinical experts to collaborate and consult on patients across the ERN network, as required
- Complete the ERN annual monitoring exercise and reporting process in conjunction with the ERN MDT service
- Compile relevant data and documentation to support the Clinical Lead / Co Lead and Care Coordinator in the ERN 5 yearly evaluation process (AMEQUIS)
- Support the ERN 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
- 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
Rare Disease Data Reporting
Provision of accurate rare disease data and data reporting to support national reporting and surveillanceContribute to a national rare disease registry when establishedStreamlining data collection and analysis procedures to ensure fast access to metricsQuality 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 performanceParticipate in risk management where required and identify areas for improvementContribute to the development and implementation of policies and procedures for effective data handling and managementResearch
Liaise with regulatory bodies such as the SJH / TUH Joint Research Ethics Committee, National Research Ethics Committee and Health Products Regulatory Committee as may be requiredThe accurate recording of all Research data from source documents to Case Report Forms.The maintenance, storing and submitting of data. Verify that all data are transferred from original source documents accurately.Extracting data from patient’s medical records and clinical forms ensuring it is complete and accurate and enter it into the paper or electronic case report form within Good Clinical Practise guidelinesEnsuring Patient Consent forms are completed correctly, filed and stored as per Good Clinical PracticeBiological sample processing, maintenance and the shipment of samples to outside laboratories. Maintaining Laboratory Supplies. This may involve collecting samples from other sites. As applicableGeneral Duties
Demonstrate the ability to maintain and develop working relationships within the departmentDemonstrate problem solving, decision making, planning and organization skillsDemonstrate an ability to prioritize work while responding with flexibility to rapidly changing prioritiesDemonstrable capacity for responsibility and initiativeHave the ability to work unsupervised and to use initiative when necessary to deal with conflicting priorities calmly and effectivelyHave proven skills in dealing in a professional and courteous manner with patients in a personal capacity and by telephone, including dealing with complaintsDisseminate relevant information to multidisciplinary team and provide opportunity for feedback from all members of the team in relation to the serviceEnsure all interaction with patients and patient records are carried out in a strictly confidential mannerOrganize and / or attend meetings, working groups, committees, as required relevant to the departmentKnow the capacity utilisation targets of all clinics and know the reasons for any variation in clinic capacity utilisationFacilitate and record participation in mandatory trainingCarry out any other duties, which may be assigned from time to timeCommitment to continuous professional development including completion of relevant internal training programmes available through our Centre for Learning & Development Prospectus.You may be required to rotate into other Grade V Data manger rolesYou will be required to work in the research department 0.5 days per weekThe above Job Specification is not intended to be a comprehensive list of all duties involved and consequently, the post holder may be required to perform other duties as appropriate to the post which may be assigned to them from time to time and to contribute to the development of the post while in office.QUALIFICATIONS & EXPERIENCE REQUIRED :
Must have criteria :
Have obtained at least Grade D3 in five subjects in the Leaving Certificate Examination (higher, ordinary, applied or vocational programmes) or equivalentHave passed an examination at the appropriate level within the QQI qualifications framework which can be assessed as being of a comparable to Leaving Certificate standard or equivalent or higher i.e. Fetac Level 5Have satisfactory relevant experience which encompasses demonstrable equivalent skills3 years relevant administration experience, 2 years of which experience must be in data managementExcellent planning and organisational skills, including using computer technology effectively as relevant to the roleExperience working in a demanding and challenging multi-disciplinary team environmentFluent command and understanding of the English language to include spoken and written wordExperience in a role that has involvement dealing with a variety of internal and external stakeholders relevant to the roleExperience with Microsoft Office SuiteDesirable
Experience in the preparation and submission of registry dataExperience in statistical analysisQualification in ICT or data analytics or a related field.Experience in healthcare informatics (or related field) working in a healthcare environmentDemonstrate the ability to gather, interpret and manage data using various tools and systems including Power BI and advanced Excel, including Pivot tablesKnowledge and experience of gathering and interrogating data using various tools and systems, including advanced ExcelREWARD & RECOGNITION
Remuneration is in accordance with the Department of Health Consolidated Salary Scales. Effective 1st March 2025 - €51,206 - € 61,253 incl 2 LSI'sThe appointments are fulltime permanent / part time permanent and pensionable.The annual leave entitlement is 29 working days per year pro rata. The leave year runs from 1st April to the 31st of March each yearNormal working hours are 35 worked over 5 days. Your contracted hours of work are liable to change between the hours of 8 am to 8 pm over 7 days to meet the requirements for extended day services in accordance with the terms of the Framework AgreementCore Area Competency Level Managing the serviceQuality & Safety of Service3Managing the serviceDelivery of Results2Managing ChangeProblem Solving & Decision Making3Managing ChangeCommunications & Influencing 2Managing YourselfTeam player3Managing YourselfPlanning and Organising 2Managing PeoplePeople Management 3Managing PeopleLeadership 2
Please go to for details of the core competencies