Registry Data Quality Officer

The Registry Data Quality Officer will provide operational support across the International Niemann-Pick Disease Registry (INPDR), combining responsibility for clinical site engagement, monitoring, and data management with a strong focus on quality, performance, and continuous improvement.

The role will support the delivery of high-quality registry operations by strengthening site processes, maintaining oversight of data quality and query management, contributing to dashboards and structured reporting, and helping to ensure that registry datasets are fit for analysis, reporting, and research use.

Key Responsibilities

Person Specification

Clinical Research Coordination

• Act as the primary contact between investigator sites and internal teams, supporting onboarding, initiation, and training activities
• Conduct remote and on-site monitoring to evaluate site-level protocol adherence, data integrity, and compliance with registry procedures
• Provide first-line support to sites on data entry, EDC use, eCRFs, and operational queries
• Undertake data entry activities at registry sites
• Manage data queries and discrepancies, ensuring timely and accurate resolution
• Prepare monitoring reports, documentation, and study communications in line with timelines
• Travel to registry sites and attend meetings within the UK and Europe

Data Management

• Perform data quality checks across datasets, including completeness, missingness, consistency, accuracy, and validation at patient, variable, and site levels
• Develop and run queries to analyse patient outcomes, treatment patterns, and registry performance metrics
• Produce structured outputs and summary tables to support reporting and decision-making
• Contribute to development of data quality dashboards to visualise key data quality indicators
• Extract, manage, and maintain registry datasets for reporting and analysis
• Support creation of analysis-ready datasets, including cleaning and standardisation of multi-source data
• Explore opportunities to streamline data workflows and reduce manual processing
• Contribute to continuous improvement of registry operations, data quality, and reporting processes

• Mission-Oriented: You’re passionate about supporting people affected by rare diseases by developing a registry system that will serve the Niemann-Pick community and its stakeholders.
• Ownership: You’re highly motivated, self-driven, outcome-focused and committed to delivering high-quality results.
• Team-Oriented: You prioritise the needs of INPDR over those of any individual function or person and work in a transparent and open manner.
• Stakeholder-Oriented: You understand and appreciate the various priorities of INPDR stakeholders and work in a manner that acknowledges their varied priorities and motivations.
• Effective Communicator: You have outstanding presentation skills, are a precise and lucid writer, and can build strong relationships in a complex stakeholder environment., * Bachelor’s degree in life sciences, healthcare, data science, or a related discipline
• Fluent in English and working proficiency in at least one of the following languages: French, German, Italian, Spanish, or Dutch

Essential Skills and Experience

• Minimum of three years’ experience coordinating, monitoring, or managing clinical research studies and/or disease registries, including working with electronic data capture (EDC) systems and electronic case report forms (eCRFs) and performing data review, query management, and data quality assessment activities
• Experience in the charity, non-profit or healthcare sector
• Ability to extract, manipulate, and analyse structured datasets using SQL
• Deep knowledge of rare diseases
• Experience preparing datasets for research, publications, or registry reporting

Desirable Experience

• Experience working with rare disease registries
• Experience using Python for data cleaning, analysis, or workflow automation
• Experience working with relational databases and data modelling concepts
• Understanding of real-world evidence (RWE) and observational research methodologies

Skills & Attributes

• Strong analytical and problem-solving skills with the ability to interpret and communicate findings
• Experience preparing reports, summaries, and stakeholder-facing documentation
• Strong Microsoft Excel and Microsoft Office skills
• Excellent written and verbal communication skills
• Ability to manage multiple priorities and work independently in a remote environment
• Ability to collaborate effectively with investigators, healthcare professionals, and internal stakeholders

• The role is 100% remote and will include travel across the UK and occasional travel within Europe.
• Standard working hours apply; with time off in lieu provided for travel