Participation

Who can participate in the registry?

All people with an inflammatory brain disease who had symptoms before the age of 18 and who live and/or are treated in Switzerland.

Currently, we are recording the following inflammatory brain diseases:

  • Demyelinating inflammatory brain diseases:
    • Optic Neuritis
    • Transverse Myelitis
    • Acute Disseminated Encephalomyelitis
    • Multiple Sclerosis
    • Neuromyelitis Optica Spectrum Disorder
  • Antibody-associated inflammatory brain diseases:
    • Anti-NMDAR Encephalitis
    • Anti-GAD65 Associated Autoimmune Encephalitis
    • Anti-AMPAR-1/2 Associated Autoimmune Encephalitis
    • Anti-Lgi-1 Associated Autoimmune Encephalitis
    • Anti-CASPR-2 Associated Autoimmune Encephalitis
    • Anti-GABAR-1/2 Associated Autoimmune Encephalitis
    • Onconeuronal Antibody (Hu, Ri, Yo, Amphiphysin, CRMP-5, Ma-1, Ma-2, SOX-1) Associated Autoimmune Encephalitis
    • Hashimoto Encephalitis
  • Other inflammatory brain diseases:
    • CNS Vasculitis
    • CNS Sarcoidosis
    • CNS Lupus
    • Rasmussen Encephalitis

How can you or your child participate?

Ask the attending specialist to register you or your child. Contact us if this is not possible: Swiss-Ped-IBrainD@ispm.unibe.ch.

Participation is voluntary. By participating, you or your child do not enter into any obligations. We only document what is examined or prescribed in the hospital or doctor’s office anyway. You can withdraw from the registry at any time without giving reasons (e.g. by e-mail).

What happens with the data?

Data protection is our top priority. Therefore, we store the data in a secure IT environment at the University of Bern and strictly adhere to all legal rules of data protection. Only employees of the registry or researchers who absolutely need the data for their work are allowed to work with the registry data. They are all subject to the duty of confidentiality.

We publish research results in an anonymous way in scientific journals, at congresses and on this webpage. In this way, we promote the exchange of knowledge between doctors, therapists and educators in Switzerland.