Who will be able to use this data?

One of the goals of this registry is to gather and disperse GBS|CIDP information as quickly and securely as possible.  In agreement with the standards set by NORD and the IRB, we plan to share de-identified data with any researcher who asks for it for a legitimate reason. The GBS|CIDP Foundation International in collaboration with the GBS|CIDP Foundation Patient Registry Advisory committee comprised of members of the GBS|CIDP Global Medical Advisory Board, clinical and research experts, will review requests for access to de-identified data from researchers.  Investigators wanting to use the registry or contact participants will need to apply to the GBS|CIDP Foundation Patient Registry Advisory Committee. The application will require information concerning:  Principal Investigator, aims and hypotheses of the proposed research, and where the research will be performed, and how the research will be funded.  The GBS|CIDP Patient Registry Advisory Committee will review and approve applications based on study quality, potential, and value to GBS|CIDP and variants of the condition.