Patient Registry

In December 2008, the Advocacy announced the launch of the Neuroacanthocytosis Patients’ Registry, a database for NA clinicians and researchers, originally conceived by Dr Danek in 2003. A wealth of anonymised NA case information is available online to authorised researchers on the website of the European Huntington Disease Network.

For enquiries please contact the Advocacy.

Researchers benefit from access to The Leiden Open Variation Database which was set up to provide a flexible, freely available tool for genomic variant and phenotype collection, display and curation. LOVD allows both patient-centered and gene-centered views. LOVD is open source, released under the GPL license, and is actively being improved. On the server in Leiden, LOVD offers free hosting and support of LOVD-powered gene variant databases.