Is there a Patient Registry for MdDS?

A patient registry for Mal de Débarquement Syndrome is under construction. We are working towards launching in late 2025, on the NORD IAMRARE platform.

A patient registry is a centralized location where patients provide their unique data. By continuing to add data at intervals, a picture of that patient’s medical condition may emerge. A generalized “natural history” of the condition may be revealed as well. When made available to researchers and clinicians as de-identified, aggregated patient data, improvements in patient care, treatments, and potentially cures may be developed.