Chronic inflammatory demyelinating polyneuropathy (CIDP) is a rare disorder that affects different people in different ways. The symptoms, treatment response, and disease course may vary from person to person, or even in the same person at different stages of the disease. As previously reported in 2017, INCbase is a study that intends to explore these very aspects of CIDP. This study is a registry. It does not involve investigational medications or procedures. Instead, INCbase will collect a standard set of information from large numbers of patients with CIDP across the globe. This information will be periodically updated within INCbase, so that it can be better understood how the disease changes over time. Data will be stored in a secure state-of-the-art modular research database which has been developed with patient privacy and investigator autonomy as first priorities. Investigators that are part of the INCbase network will have the opportunity to use the database as part of unprecedented international collaborative studies. The data may also be used on a smaller scale to securely conduct single center studies or even to help physicians take care of CIDP patients during routine clinical practice. INCbase is led by an international collaborative of CIDP experts. The investigators anticipate that this study will lead to an understanding of the diagnosis, prognosis, and treatment of CIDP in way not previously possible.
During the online Peripheral Nerve Society meeting in June 2020, the progress and launch of the INCbase website was discussed. Although the COVID-19 pandemic has delayed initiation of the study in some countries, we anticipate that through the end of 2020 the study will open to recruitment across the globe. The study protocol has been approved in the Netherlands and currently 12 more countries are in this process of seeking ethical approval. In the US, Dr. Jeffrey Allen from the University of Minnesota is the national coordinator for INCbase. Participating US centers are yet to be determined, but are expected to be geographically diverse to allow maximum participation from eligible and interested patients. Additional information and updates on INCbase can be found at www.incbase.org.Need more resources? Join our community!