INCbase

Chronic Inflammatory Demyelinating Polyradiculoneuropathy (CIDP) is a remarkably heterogeneous disorder with various clinical presentations. Despite different sets of diagnostic criteria, not all patients with treatable CIDP are identified. Several challenges remain during treatment, such as which treatment should be started first, when are patients adequately treated and when can treatment be stopped. In other words, there is a unmet need to improve diagnostic criteria and find clinical or biological variables that can predict treatment response, disease activity and long-term outcome. To address these questions, it is required to conduct a long-term prospective study with a large group of CIDP patients collecting highly standardized data and biomaterials. In recent years, several national registries and biobanks have been developed. However, even in large countries, these registries will not be able to include sufficient patients to address the most important challenges described above. Recently a multidisciplinary group of 24 people from 13 countries attended the European Neuromuscular Center (ENMC) workshop. Eight currently ongoing international CIDP registries that included a total of over 1300 patients were compared to assess infrastructure and collected clinical data, diagnostic data and biomaterials. During this workshop a consensus was reached on several important issues to make comparison between these registries possible. A central database (INCbase) will be used to upload data from current registries and databases while these registries continue to exist. Next steps are to harmonize the current registry protocols and to set up INCbase. This global database is expected to be operational in 2018 and will collect data from thousands of CIDP patients to enable solving some of the important challenges in diagnosing and treatment of CIDP.

F. Eftimov