E-HODs registry is based in the Universitaetskinderspital Heidelberg, Germany. The web-based password-protected registry has been established to include standardised follow-up investigations of children and adults with one of the homocystinurias, methylation or remethylation disorders. The aim is to collect information on the natural history, effects of treatments, outcome and complications in these rare disorders. Patients are followed using a standardised assessment schedule including basic data, family history, age at diagnosis, first symptoms, frequency and duration of hospitalisation, medical and developmental history, physical and neurological examination, MRI studies, neuropsychological tests, and quality of life assessment. Data should be entered at least once a year.
Access to the E-HOD registry for registered users
(if you have lost the login information, please, contact Florian Gleich)
How to join the E-HOD registry
Plans for interoperability of E-HOD and U-IMD registries
E-HOD is working on making the data model used in the E-HOD registry interoperable with the data model of the U-IMD.