The GBS|CIDP Registry collects disease-specific natural history data about individuals with GBS|CIDP or variants of the condition, with the goal of improving the understanding of Guillain-Barré Syndrome (GBS) and Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) and informing treatment development. Registry questionnaires were built from common data element standards and cover the following topics:
If you would like access to the GBS|CIDP Patient Registry data for a research project, please contact our registry administrator, Lori Basiege, at Registry@gbs-cidp.org. Access to GBS|CIDP Patient Registry ata is contingent upon project approval by the GBS|CIDP Advisory Board.
“Registries for Rare Diseases: Involve the Patient” http://www.medscape.com/viewarticle/837851?src=par_nord_stm_mscpedt&faf=1 Originally published on Medscape Rare Diseases as part of the NORD and Medscape Editorial Collaboration.