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Head of Registry Operations, Cystic Fibrosis Trust
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Head of Registry Operations, Cystic Fibrosis Trust
About the Role
The Cystic Fibrosis Trust is the only UK-wide charity dedicated to supporting people affected by cystic fibrosis (CF), driving cutting-edge research, and improving healthcare standards. This is an exciting leadership opportunity to:
- Lead and manage a highly motivated team within the Research and Healthcare Data Directorate
- Be part of the **internationally recognised UK CF Registry
- Play a key role in the strategic evolution of the Registry
Role Purpose
You will:
- Lead and implement projects to maintain and develop the quality, integrity, and effectiveness of the UK CF Registry
- Support the delivery of external projects to maximise the Registry data’s impact on improving care and health outcomes for everyone with CF in the UK
- Manage relationships across key stakeholders, including:
- Clinical teams
- Commercial partners (essential for the Registry’s continued success and delivery of high-quality programmes)
Responsibilities
-
Data and Registry Governance
- Oversee the maintenance and enhancement of the UK CF Registry
- Ensure data governance, security, and compliance standards are upheld
-
Project Delivery & Strategic Leadership
- Lead cross-departmental projects impacting CF research and patient care
- Drive initiatives that maximise the value of Registry data for evidence-based decision-making
-
Stakeholder Engagement
- Build and sustain effectively working partnerships with:
- Healthcare professionals and clinical specialists
- External stakeholders, including research partners and commercial collaborators
- Build and sustain effectively working partnerships with:
-
Reports & Accountability
- Provide regular progress updates to senior management and governing bodies
- Ensure measurable outcomes in line with the Charity’s strategic vision
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- Collaboration & Continuous Improvement
- Work with leadership and teams to evolve the UK CF Registry’s function
- Support wider organisational goals, such as care improvement and training standards
Requirements
Experience
✅ Proven leadership in managing team-based projects (preferably in healthcare or research) ✅ Strong track record in working with large healthcare datasets with:
- Deep understanding of data governance
- Ability to handle sensitive and confidential data ✅ Experience in stakeholder relations across clinical, research, and commercial sectors
Skills
🔍 Ability to drive systemic change in data-driven healthcare settings 🔍 Strong analytical and strategic thinking—with a focus on resolve real-world impact 🔍 Excellent communication (internal and external) to engage diverse stakeholders 🔍 Change management skills to lead transitional phases (e.g., UK CF Registry evolution)
Personal Attributes
💙 Desire to drive improvements in CF treatment and care—with a commitment to equitable access 👥 Experience working in collaborative, mission-driven environments
Role Location & Travel
-
Office Requirement:
- 40% London-based (Requiring attendance at the Cystic Fibrosis Trust Head Office)
- Home-based role allowed, but London attendance is mandatory for business needs
-
Travel:
- UK-wide travel required (consistent with role)
- Occasional international travel may be necessary
-
Eligibility:
- Must be UK-based
- Pre-employment check:
- Satisfactory Basic DBS check required before starting
- Must have Right to Work in the UK (no Home Office sponsorship available)
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Employee Benefits
✔ Flexible working policies ✔ 30 days annual leave (pro-rata for part-time) ✔ Contributory pension scheme ✔ Private Healthcare Cash Plan (covers:
- Dental
- Optical
- 24/7 GP service) ✔ Employee Assistance Programme ✔ Learning & development opportunities
Closing Date & Timeline
📅 Closing date for applications: 11:59pm, Monday 20 July 2026 ⏰ First interviews: Thursday, 30 July 2026 📅 Second interviews: Week commencing 10 Aug 2026 / 17 Aug 2026 (Preferably in person at our London office)
We reserve the right to shortlist or extend closing earlier if necessary—apply early.
How to Apply
🔗 Where?
Apply Now through our recruitment portal (via Hireful)
🚫 Note
- No agents, media, or headhunters, please.
- Read the full job description & person specification for further details.
Before submitting, visit [this link]((insert link to full P&S if applicable)) for comprehensive requirements.
About Our Commitment to Inclusivity
At Cystic Fibrosis Trust, we seek to create an inclusive environment where everyone belongs—allowing staff to ** раскрыть свой потенциал** with authenticity. Our D&I vision is to attract, nurture, and retain staff from diverse backgrounds, including:
✓ People living with CF ✓ Ethnic minorities ✓ LGBTQ+ individuals ✓ Staff with disabilities
We condemn discrimination based on:
- Age, gender reassignment
- Civil partnerships, pregnancy/maternity
- Disability (physical/mental)
- Race, nationality, religion
- Sex, sexual orientation
- Union membership
Every candidate will be judged solely on their skills, integrity, and passion for improving CF lives.
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