Registry Data & IT Analyst

The Cystic Fibrosis Foundation is a leading healthcare nonprofit organization like no other. For decades, we have been taking major steps and pioneering new ways to advance the mission to find a cure for cystic fibrosis and to provide all people with CF the opportunity to lead long, fulfilling lives by funding research and drug development, partnering with the CF community, and advancing high-quality, specialized care.

By joining the Cystic Fibrosis Foundation, you will be part of a dedicated team committed to our core values and working towards a cure for cystic fibrosis. We offer a collaborative and supportive work environment, opportunities for professional growth, and the chance to make a meaningful impact in the lives of those affected by CF. Learn more about why work at the Cystic Fibrosis Foundation.

Position Summary:

The Registry Data & IT Analyst plays a critical role in the day-to-day operations of the CF Patient Registry Team. This individual works at the intersection of data management, IT, and clinical research — ensuring the integrity, quality, and accessibility of registry data that supports patient care, research, and regulatory reporting. The successful candidate is technically versatile, intellectually curious, and eager to harness AI-assisted tools to drive efficiency in complex data and reporting workflows.

The Cystic Fibrosis Foundation’s national office is located in Bethesda, MD. For candidates located in the MD, VA, or DC region, this is a hybrid role and requires two to three days per week in the Bethesda office. Candidates located anywhere in the U.S. outside of the MD, VA, or DC region are eligible for remote work.

ESSENTIAL DUTIES AND RESPONSIBILITIES:

• Has expert knowledge of the CF registry data and registry-related applications. Assists the team in development and update of SSRS reports, writing, testing and deployment of .NET applications and T-SQL scripts. 

• Analyzes, verifies, and produces registry data reports to be released to the public, care centers, and other stakeholders. Has knowledge of internal data systems and tools. Tests .NET and other software applications. 

• Gathers users' requirements and translates them into technical requirements specifications. Checks compliance of technical solutions to requirements. 

• Assists in the programming and development of proprietary reporting tools to meet external user requirements. 

• Programs internal documents to facilitate and complete high priority tasks in a timely manner. 

• Documents, tracks, and manages issues and risks, including timely update of issue/risk logs, facilitating development and documenting risk mitigation plans, and providing status to Senior Director, Patient Registry Program. 

• Assists in creating and maintaining project planning documents and reports. 

• Supports project metrics analysis, team communication, resource planning, risk analysis, report generation, and documentation control. 

• Adheres to IS Project Management standards, policies, procedures, and methodologies. 

• Performs a complete range of standard support duties utilizing appropriate PC and web applications to prepare and distribute correspondence, status reports, minutes, numerical data, tracking of project assignments, charts, and forms in an accurate manner. 

• Maintains technical documentation. 

• Travels occasionally to provide support during meetings or conduct registry training. 

• Manages and upgrades established processes while troubleshooting and resolving data issues. 

Data Management & Quality 

• Perform data manipulation, transformation, and analysis in SQL Server 2019.

• Identify data anomalies, inconsistencies, and quality issues using advanced analytical techniques. 

• Design and implement data validation rules and quality control processes.

• Support ETL workflows and data integration between registry and other clinical systems. 

Reporting & Visualization 

• Develop and maintain operational and analytical reports in CFSmartReports, Power BI, and other reporting tools.

• Execute queries and generate results for production of the CFF Patient Registry Annual Data Report. 

• Create clear, actionable data visualizations to communicate trends and findings to clinical and research stakeholders. 

• Build and maintain Excel-based reporting tools using advanced formulas, pivot tables, and automation (VBA/macros). 

Analytical Support 

• Experience with longitudinal data management and query implementation.

• Support ad hoc analytical requests from research, clinical, and leadership teams. 

• Contribute to the development of data products for internal and external stakeholders, including pharma partners. 

IT & Application Support 

• Assist in the development, testing, and maintenance of registry application components. 

• Support integration and interoperability work (e.g., HL7/FHIR, EHR interfaces). 

• Troubleshoot data and system issues; document root causes and resolutions. 

AI & Innovation 

• Actively explore and adopt AI-assisted tools and automation to improve data processing, reporting, and analytical workflows. 

• Contribute ideas for process improvement and efficiency gains across registry operations. 

KNOWLEDGE, SKILLS, AND ABILITIES REQUIRED:

Preferred Qualifications