How is data collected?

Data in INCbase is collected by using a state of art modular web-based database. Upon becoming an INCbase member, you will be given access to the database to enter and view your own CIDP patients. You will also have the opportunity to change aspects of the database so to fit your local preference.

Data is collected by using a modular approach. A core module is used to obtain uniform baseline data across all participants. This data will provide much needed information to better define the clinical and electrophysiological features of the disease. After a baseline visit participants can continue with only the core module for collection of standard continuity data, or may enroll in an extended module. Extended modules collect data in addition to the core module. Extended modules are used to explore specific questions that may only be applicable to some patients. Local investigators will determine which patients are appropriate for any given extended module, or if only core module data will be collected. Factors that may influence extended module participation may also include local infrastructure, financial support, and mobility of patients/distance of patients to centers.Modules may differ in the number of visits and specific data collected during this visit.

Every investigator that enters data into the database remains the owner of that data. Your data can be exported from the database and may be used by you to create summaries of visits of individual patients that can be used in daily practice. For use of collaborative data a proposal must be approved by the INCbase Steering Committee. Once approved, the proposal will be shared among INCbase network members. Individual members have the opportunity to exclude their data from the proposal based on an opt-out principle.

For a quick glance of the database please see this video.

Data entered into the database will be governed according to the General Data Protection Regulation (GDPR) of the European Union. This, and other legal and privacy issues, are explained in the INCbase Data Registry and Biomaterial Policy.