Development of a Dashboard for Rare Diseases - A Technical Case Report

Area of Science:

• Medical Informatics
• Rare Disease Research
• Data Visualization

Background:

• Rare diseases affect 30 million Europeans, presenting challenges in information access for patients and physicians.
• Effective data documentation and utilization are crucial for rare disease visibility and high-quality research.

Purpose of the Study:

• To optimize the processing, use, and accessibility of rare disease data.
• To design and develop a user-centered dashboard prototype for visualizing rare disease key figures.

Main Methods:

• Conducted a situation and requirements analysis to understand stakeholder needs.
• Developed a prototype dashboard using a user-centered design process.
• Focused on automated statistical analysis and data preparation for the dashboard.

Main Results:

• The requirements analysis highlighted a demand for statistical analyses from stakeholders.
• The prototype dashboard successfully automates the calculation and provision of statistics.
• Evaluations indicated potential users find the dashboard valuable and would use it.

Conclusions:

• Stakeholders are interested in accessing prepared rare disease information.
• The developed dashboard prototype demonstrates a viable method for improving data accessibility.
• This approach can enhance knowledge about rare diseases by increasing the utilization of existing information.