European Network and Registry for Homocystinurias and Methylation Defects
E-HOD is an acronym for the “European network and registry for Homocystinurias and methylation Defects”. E-HOD started as an EU project (The E-HOD project; No.2012_12_02) and has received funding from the European Union in the framework of the Health Program for three years. From 2019, EHOD has been transformed into the legal structure of an international collaboration between 69 centers from all over the world interested in these rare diseases. Collaboration encompasses participation in the E-HOD registry, research activities and guideline development.
The registry is the core activity of E-HOD. Here, our collaboration partners enter anonymized patient data and we have been able to collect data from more than 700 patients with one of these rare diseases. After entering baseline data, one follow-up visit per patient per year is documented. The registry helps us to learn more about the natural course of the disease, treatment options and patients’ outcome over the years.
Research and guideline development are closely related to the registry activities and establishment of a scientific network for the homocystinurias and methylation disorders. E-HOD helps medical professionals to meet and discuss patients, to seek help when facing a problem and to develop research projects with the aim to improve patient care and outcome by better understanding the diseases and treatments. Guidelines ensure that state-of-the-art knowledge is transferred to any site seeing affected patients and thus facilitate equal treatment. The EHOD network also includes patient representatives. Together with them, EHOD has organized successful patient-expert meetings, included patient advice in guidelines and included patients’ and families’ perspectives in exploration of new aspects of patient care and research.
E-HOD is always open to new collaboration partners.
The present structure of the E-HOD consortium
The E-HOD collaboration constitutes of 70 institutions worldwide. Partner institutions name a metabolic specialist who represents them as a member with full voting rights.
At the annual meeting of members, decisions about projects, future activities etc. are made and active collaboration between partners is facilitated and encouraged.
The Executive Board of E-HOD has been elected in September 2019 for a period of three years. Members to the Executive Board are Martina Huemer (Bregenz, Austria) and Viktor Kozich (Prague, Czech Republic)(Chairpersons), Matthias Baumgartner (Zurich, Switzerland), Henk Blom (Rotterdam, The Netherlands), Carlo Dionisi-Vici (Rome, Italy), Stefan Kölker (Heidelberg, Germany) and Andrew Morris (Manchester, UK). The scope of the Executive Board is to initiate research, foster collaboration, update guidelines, and provide financial means to sustain the registry and other project activities.
The Scientific Board (established in 2019, members elected for 3 years) critically revises projects submitted to EHOD, helps in developing and improving research projects and advises the Executive Board on all research-related issues.
Members to the Scientific Board: Ivo Baric (Zagreb, Croatia) and Luciana Hannibal (Freiburg, Germany) (Coordinators) and Matthias Baumgartner (Zurich, Switzerland), Tawfeq Ben-Omran (Doha, Qatar), Henk Blom (Rotterdam, The Netherlands), Maria-Luz Couce (Santiago de Compostela, Spain), Carlo Dionisi-Vici (Rome, Italy), Martina Huemer (Bregenz, Austria), (Stefan Kölker (Heidelberg, Germany), Viktor Kozich (Prague, Czech Republic), Andrew Morris (Manchester, UK), and Ida Schwartz (Porto Allegre, Brazil).
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.