Cystic Fibrosis Foundation

Registry Data & IT Analyst

Cystic Fibrosis Foundation$94K — $117K *
Healthcare
Less than 5 years of experience
Job Overview by Ladders

Qualifications

  • 5-7 years of experience in data management within a healthcare or research setting.
  • Expertise in SQL Server 2019, including querying and data manipulation.
  • Strong proficiency in Microsoft Excel and familiarity with VBA/macros for reporting purposes.
  • Knowledge of C# (.NET) for application development and scripting.
  • Experience with data visualization tools such as Power BI.
  • Familiarity with HL7/FHIR standards is preferred.

Responsibilities

  • Manage and validate CF registry data ensuring quality and integrity.
  • Create and maintain detailed reports and dashboards using SSRS, Power BI, and other tools.
  • Translate user requirements into technical specifications for development.
  • Support the development and maintenance of clinical application components.
  • Identify and resolve technical and data issues proactively.
  • Facilitate communications by documenting status updates and project metrics.
  • Explore AI tools to innovate and streamline data processing methods.

Benefits

  • Hybrid work model available for candidates in MD, VA, or DC.
  • Opportunity for remote work for candidates based outside MD, VA, or DC.
  • Commitment to professional development and support for career growth.
  • Comprehensive health benefits and competitive compensation packages.
Full Job Description
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:

Technical Skills

  • Expert-level proficiency in Microsoft Excel (advanced formulas, pivot tables, VBA/macros, Power Query).
  • Strong SQL skills with hands-on experience in SQL Server 2019 - querying, stored procedures, data manipulation.
  • Proficiency in Python for data analysis, scripting, and automation.
  • Working knowledge of C# (.NET) for application-level development and scripting.
  • Experience with data visualization tools and techniques.
  • Familiarity with R for statistical analysis a plus.


Domain & Analytical Skills

  • Strong analytical and problem-solving skills with a demonstrated ability to find and resolve data quality issues.
  • Experience with relational databases and data modeling concepts.
  • Prior experience with data management of complex longitudinal data in a healthcare or health research setting (patient registries, clinical data, or similar a strong plus).


Preferred Qualifications

  • Experience supporting data management and complex queries using healthcare data, large cohort study data, or clinical data systems.
  • Experience developing or customizing reporting applications.
  • Familiarity with HL7/FHIR standards and EHR integration.
  • Experience with real-world evidence (RWE) or regulatory-grade data.
  • Background in healthcare IT, computer science, or data science.


Professional Attributes

  • Curious and self-driven - proactively seeks better methods and tools.
  • Enthusiasm for AI tools and a forward-looking mindset toward automation and efficiency.
  • Strong attention to detail with a commitment to data accuracy and integrity.
  • Ability to work collaboratively across clinical, research, and IT teams.
  • Clear written and verbal communication - able to translate technical findings for non-technical audiences.


REPORTING RELATIONSHIPS:
  • Reports to the Senior Director, Patient Registry. No direct reports.


WORKING CONDITIONS:
  • Normal office environment with little exposure to excessive noise, dust, and temperature.
  • Some travel may be required.
  • Ability to work as part of a team committed to delivering exceptional customer service.


The above is intended to describe the general content of and requirements for the performance of this job. It is not to be construed as an exhaustive statement of essential functions, responsibilities or requirements.

This position will be posted for a minimum of 5 days or until the position is filled. Applications will be accepted on an ongoing basis, so candidates are encouraged to apply promptly if interested.

The salary range is $94,200.00 to $117,600.00. Specific salary varies based on geographic location and is commensurate with experience.

Total Rewards: The CF Foundation is committed to offering competitive compensation (base pay and incentive), benefits, time off and professional development opportunities that maximize our ability to recruit, retain, reward, and motivate a highly qualified and diverse workforce. Visit our Why Work at the Cystic Fibrosis Foundation for detailed total rewards information.

About Cystic Fibrosis Foundation

The Cystic Fibrosis Foundation is a 501 non-profit organization in the United States established to provide the means to cure cystic fibrosis and ensure that those living with CF live long and productive lives. The Foundation provides information about cystic fibrosis and finances CF research that aims to improve the quality of life for people with the disease. The Foundation also engages in legislative lobbying for cystic fibrosis.
Learn more about Cystic Fibrosis Foundation

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