Rare Disease Postdoctoral Researcher

Job Title: Rare Disease Post-doctoral Researcher in NOCA

Location:  RCSI, St Stephens Green Dublin

Reporting to:  Head of Data Analysis and Research NOCA

Tenure: 18-month fixed term contract

The Royal College of Surgeons in Ireland (RCSI) is a private, self-financing, not-for-profit medical and surgical college headquartered in Dublin (Ireland) with global reach through its overseas medical universities and health care centres in the Middle East, the Far East and Africa. Since its foundation in 1784, it has played a leadership role in Irish surgical and medical education. Currently, it operates the largest Medical School in Ireland and provides undergraduate education in Physiotherapy, Pharmacy, and Nursing. In addition to Surgery, it also provides postgraduate training and education in Radiology, Dentistry, Nursing & Midwifery, Sports and Exercise Medicine, Healthcare Management and Leadership, and has an Institute of Research.

National Office of Clinical Audit

The National Office of Clinical Audit (NOCA) was established in 2012 to create sustainable national clinical audit across the Irish healthcare system.  NOCA is funded by the Health Service Executive Office of the Chief Clinical Officer (CCO), governed by an independent voluntary Board and operationally supported by the Royal College of Surgeons in Ireland (RCSI).

Internationally, clinical audit is a recognised approach to improving the quality of patient care and improving outcomes. Working with the HSE and the Department of Health through its National Clinical Effectiveness Committee, NOCA designs, establishes and supports a portfolio of national clinical audits based on national priorities that include burden of care, variation of care, availability of clinical standards and economic benefit.

NOCA advocates for change at a national level, arising from key findings in our audits. We do this by working with senior decision makers at both policy and operational levels within the Irish healthcare system. NOCA promotes transparent reporting for public, service providers and policy makers.

Summary of Post

The Rare Disease Research Catalyst Consortium is a group of Irish-based healthcare workers, researchers and patients working together to:

1. Increase the influence of rare disease patients in RD research and policy
2. Increase Irish engagement with national and international networks including the Rare Disease Clinical Trial Network and European Reference Networks (ERNs)
3. Build rare disease research activity and excellence in Ireland, enabling engagement with the upcoming European Rare Disease Partnership and
4. Open and extend communications within Ireland and with international stakeholders to further these aims

Work Packages include:

1.       Governance - providing oversight and quality monitoring of the project, liaison and communication with stakeholders.

2.       ‘Unsolved’ patient cases – building research pathways for those who do not have a diagnosis (syndromes without a name).

3.       Data co-ordination – integrating EU registries and making people living with RDs in Ireland ‘findable’ for research.

4.       Public and patient involvement – keeping patient priorities central to RD research;

5.       Training of new researchers – growing future Irish RD research capacity.

The Rare Disease Research Catalyst Consortium, in collaboration NOCA, is seeking a highly motivated Post-doctoral Researcher to join our team and contribute to Work Package 3. This role will involve conducting a scoping review of the data environment for rare disease research in Ireland and across the European Union (EU) and European Reference Networks (ERNs). The successful candidate will analyse options to strengthen the future data environment, enabling Irish researchers to effectively collaborate and lead rare disease research projects.

Role and Responsibilities:

•       Conduct a comprehensive scoping review of the current data environment for rare disease research in Ireland, the EU, and ERNs. This includes identifying existing data registries, databases, and research initiatives, and evaluating their accessibility, interoperability, and relevance to rare disease research.

•       Evaluate various options to enhance the future data environment for rare disease research in Ireland.

•       Prepare an options appraisal report outlining future options to strengthen Ireland's rare disease research data environment.

•       Lead the application for a new research award aimed at further exploring future options for rare disease data integration in research.

•       Generate comprehensive reports, publications, and presentations based on research findings, ensuring that they adhere to the highest standards of academic and scientific integrity.

•       Assist with writing annual reports, research papers, journal articles, trend papers as appropriate.

•       Carry out any other reasonable duties as might be required to meet the needs of the NOCA.

Essential Requirements/Qualifications for the role:

• PhD in population health sciences, epidemiology, biostatistics or related discipline
• Demonstrable capacity for independent research, experience of research leadership
• Strong track record of peer-reviewed publications in journals of high quality/impact
• Excellent quantitative analysis skills
• Ability to work independently and efficiently
• Excellent organisational, interpersonal, report writing and IT skills
• Familiarity with the healthcare system in Ireland and a keen interest in improving clinical practices and patient outcomes through clinical audit and/or evidence-based research
• Communication skills: proven ability to communicate complex ideas
• Project management skills: ability to ensure that project plans are communicated and that all timelines are met
• Self-starter with the ability to work effectively as part of a team; is cordial, tolerant and willing to help others; is cooperative and patient; shares work and information; establishes rapport, can influence and develop effective networks
• Conscientious: has a pro-active approach to work, anticipating and resolving problems in advance; has keen attention to detail, from anticipating and addressing issues in advance to understanding requests and delivering quality work with minimal errors
• Flexibility: can operate flexibly within a busy environment, can shift focus when required
• Motivated: displays a ‘can-do’ attitude, be committed to the development of NOCA and demonstrates enthusiasm and passion for the role.

Desirable Requirements/ Qualifications for the role**:**

•       Knowledge of rare diseases and familiarity with the current landscape of rare disease research, data registries, and initiatives in Ireland, the EU, and ERNs.

•       Working knowledge of clinical audit and quality improvement methodologies

•       Experience of working in multidisciplinary teams

•       Experience in stakeholder engagement

•       Project and team leadership, coordination, and management skills

Note:  This post is an 18-month fixed-term contract (6-month probationary period).  A panel of applicants may be created.

For informal enquires contact Fionnola Kelly, Head of Data Analytics and Research, NOCA at fionnolakelly@noca.ie