[Registries for rare diseases. Compliance and data protection]

Area of Science:

• Epidemiology
• Rare Diseases
• Medical Research

Context:

• Clinical and epidemiological research for rare diseases is challenged by small patient cohorts.
• Disease-specific networks are crucial for collecting comprehensive data.
• German Ministry of Research supports data collection initiatives.

Purpose:

• To highlight the importance of data registries for rare disease research.
• To demonstrate the feasibility of successful data collection through voluntary participation.
• To outline methods for establishing data registries and research networks compliant with data protection.

Summary:

• Comprehensive data collection in registries is essential for rare disease research.
• Voluntary participation based on informed consent yields satisfactory data completeness.
• The German Childhood Cancer Registry exemplifies successful data collection for medical research.

Impact:

• Enables robust clinical and epidemiological studies for rare diseases.
• Facilitates medical research by overcoming data scarcity.
• Provides a model for building compliant data registries and research networks.