ERN EpiCARE

Pomoc pro pacienty se vzácnými, málo rozšířenými a komplexními onemocněními

Since 2017, the Epilepsy Center Brno has been one of only two institutions in the Czech Republic that are members of the international reference network EpiCARE, which connects experts across Europe in the effort to help as many patients as possible live seizure-free.

Epilepsy is an umbrella term for a wide range of rare and complex conditions. According to ORPHANET – the European portal for rare diseases – there are 137 conditions where epilepsy is a key symptom. Many patients, however, remain undiagnosed and without access to appropriate treatment. Some of these conditions are so rare they affect only a handful of individuals across all of Europe. As a result, most doctors will never encounter these cases in their routine practice.

Thanks to EpiCARE, physicians can consult challenging cases with colleagues from other expert epilepsy centers across Europe, share clinical experience, participate in collaborative research, and help define best practices in treating rare epilepsies. Patients benefit from individualized treatment strategies based on the shared knowledge of an international network of experts.

This collaboration is made possible through the creation of a secure reference network – a shared anonymized database where participating centers can input and review the types of rare epilepsy cases they manage.

What are ERN Networks?

European Reference Networks (ERNs) are international collaborations of expert healthcare centers aimed at improving the care of rare, complex, and low-prevalence diseases that require highly specialized treatment. These networks allow medical professionals across Europe to consult on complex cases and provide expert recommendations on diagnosis and management.

While patients themselves do not directly access ERNs, their treating physicians – with patient consent – can submit relevant anonymized data and discuss the case with international specialists, all in accordance with national healthcare and data protection laws.

Currently, there are 24 ERNs across the EU and Norway, established under Directive 2011/24/EU on patients’ rights in cross-border healthcare.

Goals of the EpiCARE Network

Ensure access to comprehensive pre-surgical evaluations and epilepsy surgery.
Improve the diagnosis of rare causes of epilepsy.
Better identify patients with treatable rare epilepsies.
Increase access to specialized care and support research into innovative, causative therapies for rare and complex epilepsies.

What Does It Mean for Patients?

During your initial evaluation or a follow-up appointment, you may be asked to give consent for the use of your anonymized data for research and care improvement purposes.

If your doctor wishes to consult with experts abroad or include your anonymized data in a study, they will explain the process and obtain your consent.

Data Privacy and Protection

If you choose to participate, your data will be stored under a pseudonym – a unique identifier that ensures your personal identity remains confidential. Only selected clinical details (e.g., epilepsy type, etiology, lesion type, ORPHA code) are included in the local registry. A second level of pseudonymization is applied before data is shared through the EpiCARE network. No identifiable personal data is ever shared.

Patient Benefits

Should your neurologist need expert input from international colleagues, they can consult your case only with your prior approval. You’ll always be informed in advance and your participation is entirely voluntary.

In some cases, collaborative research across multiple centers is necessary to understand rare epilepsy conditions. If your doctor believes your case could contribute to such research, they will fully explain the purpose and what kind of data may be used. Your participation in research is optional – you can decline involvement in any project even if you’ve previously consented to data sharing within EpiCARE.

Living with Epilepsy