Patient registry
This patient registry arises from the project E-IMD
which has received funding
from the European Union,
in the framework of the
Health Programme 2008-2013
which has received funding
from the European Union,
in the framework of the
Health Programme 2008-2013
The E-IMD registry has been sustained after the end of the EU funding period by funding from the Kindness for Kids Foundation
Participating centers
Number of partipicating centers: | 65 |
Number of all registered patients: | 1708 |
Number of active patients: | 1526 |
Please click on a center for more information...
Austria
Innsbruck Medizinische Universität Innsbruck, Department für Kinder- und Jugendheilkunde |
Registered patients - Total: 28 - Active: 24 |
Belgium
Antwerpen Universitair Ziekenhuis Antwerpen (UZA) |
Registered patients - Total: 1 - Active: 1 |
Bruxelles Cliniques Universitaires St Luc, Université Catholique de Louvain |
Registered patients - Total: 2 - Active: 2 |
Bruxelles Hôpital Universitaire des Enfants Reine Fabiola |
Registered patients - Total: 17 - Active: 16 |
Bruxelles University Hospital Vrije Universiteit Brussel |
Registered patients - Total: 10 - Active: 10 |
Gosselies (Charleroi) Centre Agréé des Maladies Héréditaires du Métabolisme |
Registered patients - Total: 6 - Active: 6 |
Liege Metabolic Unit - Departement of Medical Genetics CHU Liège |
Registered patients - Total: 8 - Active: 8 |
Canada
Winnipeg University of Manitoba, Faculty of Medicine |
Registered patients - Total: 0 - Active: 0 |
Switzerland
Bern Universitätsspital Bern |
Registered patients - Total: 0 - Active: 0 |
Zurich Kinderspital Zürich, Universitäts-Kinderkliniken |
Registered patients - Total: 31 - Active: 30 |
Serbia and Montenegro
Novi Beograd Institut za zdravstvenu zaštitu majke i deteta Srbije |
Registered patients - Total: 15 - Active: 12 |
Czech Republic
Prague 2 Charles University & General University of Prague, First Faculty of Medicine |
Registered patients - Total: 38 - Active: 36 |
Germany
Berlin Charite Berlin |
Registered patients - Total: 9 - Active: 9 |
Düsseldorf Heinrich-Heine-Universität Düsseldorf |
Registered patients - Total: 24 - Active: 21 |
Erlangen Universitätsklinikum Erlangen |
Registered patients - Total: 4 - Active: 4 |
Frankfurt Universitätsklinikum Frankfurt, Klinik für Kinder und Jugendmedizin |
Registered patients - Total: 12 - Active: 10 |
Freiburg Universitätsklinikum Freiburg |
Registered patients - Total: 19 - Active: 19 |
Göttingen Universitätsmedizin Göttingen |
Registered patients - Total: 7 - Active: 7 |
Hamburg Universitätsklinikum Eppendorf, Klinik für Kinder- und Jugendmedizin |
Registered patients - Total: 27 - Active: 20 |
Heidelberg Universitätsklinikum Heidelberg, Zentrum für Kinder- und Jugendmedizin |
Registered patients - Total: 278 - Active: 246 |
Leipzig Universitätsklinikum Leipzig |
Registered patients - Total: 8 - Active: 8 |
München Klinikum der Universität München |
Registered patients - Total: 26 - Active: 25 |
Münster Universitätsklinikum Münster |
Registered patients - Total: 10 - Active: 10 |
Reutlingen Klinik für Kinder- und Jugendmedizin, Klinikum am Steinenberg |
Registered patients - Total: 30 - Active: 25 |
Test centre Test centre |
Registered patients - Total: 38 - Active: 19 |
Ulm Universitätsklinikum Ulm |
Registered patients - Total: 2 - Active: 2 |
Denmark
Copenhagen Klinisk Genetisk Afdeling Rigshospitalet |
Registered patients - Total: 64 - Active: 59 |
Spain
Badalona University Hospital Germans Trias i Pujol |
Registered patients - Total: 11 - Active: 11 |
Barcelona Hospital Clinic de Barcelona |
Registered patients - Total: 0 - Active: 0 |
Barcelona Hospital San Joan de Deu |
Registered patients - Total: 113 - Active: 63 |
El Palmar Inborn Metabolic Disease Unit |
Registered patients - Total: 8 - Active: 8 |
Las Palmas de Gran Canaria Hospital Universitario Materno-Infantil de Canarias |
Registered patients - Total: 13 - Active: 12 |
Madrid Hospital Infantil Universitario Niños Jesús |
Registered patients - Total: 14 - Active: 14 |
Málaga Hospital Materno-Infantil (HRU Carlos Haya) |
Registered patients - Total: 19 - Active: 17 |
Palma de Mallorca Hospital Universitario Son Espases |
Registered patients - Total: 13 - Active: 13 |
Santiago de Compostela Hospital Clínico Universitario de Santiago de Compostela |
Registered patients - Total: 17 - Active: 17 |
France
Lille Centre Hospitalier Régional et Universitaire de Lille |
Registered patients - Total: 38 - Active: 35 |
Marseille Centre de référence des maladies héréditaires du Métabolisme |
Registered patients - Total: 36 - Active: 36 |
Paris Hôpital Necker-Enfants Malades, Assistance Publique-Hôpitaux de Paris |
Registered patients - Total: 113 - Active: 113 |
Paris Hôpital Robert Debré, Université Paris |
Registered patients - Total: 25 - Active: 25 |
Toulouse Hôpital des Enfants- CHU Toulouse |
Registered patients - Total: 0 - Active: 0 |
United Kingdom
Birmingham Birmingham Children’s Hospital NHS Foundation Trust |
Registered patients - Total: 37 - Active: 37 |
Bradford Bradford Teaching Hospitals NHS Trust |
Registered patients - Total: 3 - Active: 3 |
London Evelina Children's Hospital, St Thomas' Hospital |
Registered patients - Total: 34 - Active: 34 |
London Great Ormond Street Hospital |
Registered patients - Total: 37 - Active: 36 |
London National Hospital for Neurology and Neurosurgery |
Registered patients - Total: 48 - Active: 45 |
Manchester Central Manchester and Manchester Children's University Hospital |
Registered patients - Total: 24 - Active: 24 |
Greece
Athens Agia Sofia Children's Hospital |
Registered patients - Total: 5 - Active: 5 |
Thessaloniki Hospital Thessaloniki 'Hippocration' |
Registered patients - Total: 8 - Active: 8 |
Croatia
Zagreb Sveuciliste u Zagrebu, Medicinski fakultet |
Registered patients - Total: 31 - Active: 29 |
Hungary
Szeged University of Szeged |
Registered patients - Total: 0 - Active: 0 |
India
Mumbai N.I.R.M.A.N. |
Registered patients - Total: 8 - Active: 5 |
Italy
Padova Azienda Ospedaliera di Padova |
Registered patients - Total: 60 - Active: 59 |
Rome Ospedale Pediatrico Bambino Gesù, U.O.C. Patologia Metabolica |
Registered patients - Total: 62 - Active: 59 |
Japan
Kumamoto city Kumamoto University Hospital |
Registered patients - Total: 2 - Active: 2 |
Moldova, Republic of
Chisinau Institute of Mother and Child |
Registered patients - Total: 3 - Active: 2 |
Netherlands
Amsterdam Academisch Medisch Centrum |
Registered patients - Total: 31 - Active: 20 |
Rotterdam Erasmus MC-Sophia Kinderziekenhuis, Erasmus Universiteit Rotterdam |
Registered patients - Total: 19 - Active: 18 |
Utrecht Wilhemina Kinderziekenhuis (WKZ) |
Registered patients - Total: 8 - Active: 8 |
Poland
Warsaw The Institute of Mother and Child - Instytut Matki i Dziecka |
Registered patients - Total: 48 - Active: 46 |
Portugal
Lisbon Centro Academico de Medicina de Lisboa |
Registered patients - Total: 0 - Active: 0 |
Porto Unidade de Doenças Metabólicas, Serviço de Pediatria, Hospital de S. João, EPE |
Registered patients - Total: 34 - Active: 33 |
Romania
Bucharest Institute for Mother and Child Care "Alfred Rusescu" |
Registered patients - Total: 3 - Active: 3 |
Taiwan
Taipei City, Taiwan Department of Medical Genetics, National Taiwan University Hospital |
Registered patients - Total: 46 - Active: 40 |
United States
Washington Children's National Medical Center |
Registered patients - Total: 21 - Active: 17 |