Introduction

Immune mediated neuropathies, namely Guillain-Barre syndrome (GBS), Chronic Inflammatory Demyelination Polyneuropathy (CIDP), Multifocal Motor Neuropathy (MMN) and others are rare and potentially treatable disorders. The estimated prevalence of MMN is about 1/100.000 inhabitants, that of CIDP about 3/100.000 inhabitants, and the estimated incidence of GBS is 2-4/100.000/year. Each condition differs in therapeutic response to routinely used immunomodulatory treatment (corticosteroids, intravenous and subcutaneous immunoglobulins, therapeutic plasma exchange and immunoadsorption, B-cell depleting therapy). Recently, a new drug called efgartigimod has been approved for CIDP and many others are now being tested in clinical trials. These therapies are very expensive and therefore exact and detailed real world evidence data are needed for establishment of purposeful treatment algorithm and treatment response prediction.

The national registry for GBS and CIDP was established in 2011 as a database aiming to support the implementation of a clinical standard for the treatment with intravenous human immunoglobulin and therapeutic plasma exchange into the clinical practice (the AINSO project of patients with autoimmune neuromuscular diseases treated with intravenous human immunoglobulin (IVIG) or plasmapheresis exchange (VPF) ). Nowadays, new immunomodulatory treatment modalities with proven efficacy have been implemented into clinical practiceand other are expected in the near future. The eCRF of the AINSO project was restructured and the project RESTAND was established in 2023 to cover new treatment modalities.

About the Project

RESTAND is a multicenter national retrospective–prospective project conducted under the professional auspices of the Czech Neurological Society (Česká neurologická společnost, z.s.). Neuromuscular Centers across the Czech Republic are involved in its implementation.

Project Objectives

Primary Aim:

Collection of clinically relevant data characterizing mainly:

  1. the evolution of the clinical condition
  2. diagnosis and treatment,
  3. treatment response and
  4. assessment of the final outcome of treatment about patients diagnosed with GBS, CIDP or MMN.

Secondary Aim:

The secondary aims of the project are:

  1. Creation of an information base with an overview of clinical data
  2. Centralization of care for patients with autoimmune neuromuscular diseases

Governance

Scientific Oversight

  • Registry Guarantor: Prof. MUDr. Josef Bednařík, CSc., Department of Neurology, University Hospital Brno
  • Study Coordinator: MUDr. Magda Horáková, Ph.D., Department of Neurology, University Hospital Brno

Project Management

  • Institut biostatistiky a analýz, s.r.o., a spin-off company of Masaryk University, is responsible for the overall project management and the provision of related support services.
  • Project manager: Mgr. Lenka Mokrá
  • Jednatel společnosti: Ing. Petr Brabec, Ph.D.