Summary of Post The Rare Disease Research Catalyst Consortium is a group of Irish-based healthcare workers, researchers and patients working together to: Increase the influence of rare disease patients in RD research and policy Increase Irish engagement with national and international networks including the Rare Disease Clinical Trial Network and European Reference Networks (ERNs) Build rare disease research activity and excellence in Ireland, enabling engagement with the upcoming European Rare Disease Partnership and Open and extend communications within Ireland and with international stakeholders to further these aims Work Packages include: Governance - providing oversight and quality monitoring of the project, liaison and communication with stakeholders.
'Unsolved' patient cases – building research pathways for those who do not have a diagnosis (syndromes without a name).
Data Support– integrating EU registries and making people living with RDs in Ireland 'findable' for research.
Public and patient involvement – keeping patient priorities central to RD research; Training of new researchers – growing future Irish RD research capacity.
The Rare Disease Research Catalyst Consortium, in collaboration with its national project partners, is seeking a highly motivated Post-doctoral Researcher to join our team and contribute to the Data support Work Package of the RDCat award (WP3).
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 project partners 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, 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 a 12-month fixed-term contract position with the possibility of extension contingent upon funding availability.
The initial period will include a six-month probationary period.
A panel of applicants may be created.
We are all too aware that imposter syndrome and the confidence gap can sometimes stop fantastic candidates putting themselves forward, so please do submit an application — we'd love to hear from you.