04 May INCbase launch statement
We are proud to inform you that INCbase, the Inflammatory Neuropathy Consortium Base, an international registry for patients suspected of having chronic inflammatory demyelinating polyneuropathy is launched. The first IRB approval was just obtained in Amsterdam. The extraordinary circumstances of the global COVID-19 pandemic affect us all and therefore we have chosen to postpone our formal launch to later this year. However, for those of you who are able and interested, INCbase is already open to join.
INCbase is a modular, web-based registry designed to collect high-quality standardized prospective clinical data and biomaterials. INCbase operates on a franchise model in which participating centers remain the owner of their data and biomaterials. Data collected in INCbase can be used to conduct your own monocenter studies but also to collaborate on a worldwide scale in unprecedented multicenter studies.
All center taking care of patients with CIDP are welcome to join. Countries can appoint a national coordinating center that will act as a national sponsor or centers can act as sponsors separately, depending on national legislation. Centers that have the role of sponsor, will be responsible for obtaining an IRB approval and further conduct of the study.
To make INCbase a success, we need to pursue high quality of data, while appreciating the limited time we all have to collect data. To help you with this, we have set-up a legal, financial and IT infrastructure that all centers can use. First of all, we built a user-friendly custom-made CIDP database that can be adjusted at local use level if desired, which can be also used in patient care. To further support you, we will supply an initiation package including start-up instructions, a regulatory agreement and templates of the study protocol, informed consent form and other document that you might need. These templates can be adapted accordingly to provide into local and national requirements. You can find more information on INCbase and how to join INCbase on this website and you can contact us by email at info@INCbase.org.
We hope to welcome you in INCbase soon,
The INCbase Steering Committee:
Filip Eftimov, the Netherlands
Luis Querol, Spain
Jeffrey Allen, United States
Bart Jacobs, the Netherlands
Ivana Basta, Serbia
Eduardo Nobile-Orazio, Italy
Yusuf Rajabally, United Kingdom
Jean Christophe Antoine, France
Haruki Koike, Japan