E-HOD Registry

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

  • Sign the E-HOD collaborationĀ agreement
  • Contact the registry Coordinator
  • Obtain ethical approval from your local IRB if necessary according to national/local standards.
  • Receive personalized usernames and passwords
  • Start data entry

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.

This is E-HOD

European network and registry for homocystinurias and methylation defects. Its aim is to improve the health of children, adolescents and adults affected with these rare disorders.
E-HOD has been funded by the European Commission through its Public Health and Consumer Protection Directorate (DG SANCO), PHEA programme (more information).