From Fragmented Data to Focused Care, Helping Children Get Their Right Epilepsy Treatment Sooner

Each year, thousands of children across Europe are diagnosed with epilepsy—a condition that profoundly affects neurological development, psychosocial well-being, and quality of life. In Germany alone, around 80,000 children live with epilepsy, and one in three continues to experience seizures despite treatment. Families face long waits for appointments, incomplete or repeated diagnostics, and uncertainty about next steps. These delays lead to missed therapeutic windows, poorer neurocognitive outcomes, increased mortality, and higher healthcare costs.

The Virtual Epilepsy Clinic (vEC) is developing a digital diagnostic support tool for physicians treating pediatric epilepsy. It brings structure and clarity to fragmented care pathways by consolidating each child’s medical history, diagnostic findings, and treatment course into a single, organized overview. This enables specialist consultations to begin with decision-ready information and reduces inefficiencies across the care continuum. Unlike today’s dispersed paper or PDF records, vEC provides a consistent, clinician-friendly interface that highlights completed and pending diagnostic elements while integrating seamlessly with existing pediatric workflows. Families gain transparency and direction, reducing redundant procedures and uncertainty. Clinicians can make earlier, more confident decisions based on concise, high-quality data, while hospitals and payers benefit from better coordination and more effective use of specialist time.

Currently in the PoT phase, vEC is conducting small-scale feasibility testing to validate its functionality, assess real-world usability, and clarify the specific needs of all stakeholder groups—clinicians, caregivers, and patients alike. The project ensures that its solutions deliver tangible value in daily practice, aligning digital support with the realities of pediatric epilepsy care.

The unique strength of vEC lies in its design: patients and caregivers remain within their established care network, supported by their trusted medical team and existing care pathway, while the solution operates as a secure diagnostic support system in the background. Looking ahead, vEC aims to accelerate diagnosis, reduce unnecessary testing, and ease the coordination burden families and clinicians face, ultimately improving outcomes for children living with epilepsy.

The vEC team consists of an international key opinion leader and professor in pediatric epilepsy, a senior physician with expertise in patient engagement and outpatient care, and a junior clinician working directly with affected children at Charité University Hospital. Their work is supported by one of Germany’s most outspoken patient advocacy groups. Together, they have identified the real gap in pediatric epilepsy diagnostics and treatment and are committed to closing it.