Klinik für Neurochirurgie

Why This Matters

Spontaneous Intracranial Hypotension (SIH) and Post-Dural Puncture Headache (PDPH) are debilitating but often under-recognized conditions. Despite growing awareness, both diseases remain rare, poorly understood, and frequently misdiagnosed. As a result, many patients suffer unnecessarily due to delayed or inappropriate management.

At University Hospital Freiburg, we believe it is not only a scientific opportunity—but a medical duty—to advance understanding of these conditions through systematic data collection.

Our Mission: A Multicenter Registry 

We are building a comprehensive, multicenter registry for SIH and PDPH, starting with a structured, prospective data collection initiative in Freiburg. Our aim is to unite national and international centers around a shared goal: to better characterize these diseases and improve patient outcomes through data-driven insights.

What We Collect

Our registry includes detailed, standardized information on:

• Patient demographics
• Clinical presentation and disease spectrum
• Imaging findings
• Treatment approaches and outcomes
• Disease burden and quality of life impact

This data will form the foundation for future studies on epidemiology, diagnostic markers, biomarkers, and long-term outcomes.

Collecting high-quality, structured data is the only path forward to meaningful progress.

Our Vision: Join Us in Building the Future of SIH and PDPH Research

We are actively seeking:

• Partnering centers willing to contribute data
• Clinicians interested in harmonizing diagnostic and treatment strategies

Together, we can build an infrastructure that supports translational research, clinical trials, and evidence-based care—not only at Freiburg, but across Europe and beyond.

Contact & Collaboration

If you are a researcher, or institution interested in joining our initiative, or a patient seeking information, please contact our research team at:

📧 nez.SEAL-registry@uniklinik-freiburg.de