A rare disease network is a collaborative framework that brings together healthcare professionals, researchers, patients, and other stakeholders to improve the diagnosis, treatment, and care of individuals with rare diseases. These networks aim to pool knowledge, share best practices, and coordinate efforts across institutions and countries to overcome the challenges posed by the low prevalence and high diversity of rare diseases.
Network detailsCatalogueILIAD
ERN ITHACA
Description
The main objective of ILIAD registry is to set up an interoperable registry dedicated to rare diseases within the scope of ITHACA. We intend to develop a single, trans-ERN "meta-registry" of patients with developmental anomalies (dysmorphic/Multiple Congenitital Anomalies syndromes and/or neurodevelopmental disorder) recruited by ERN ITHACA.
General Design
- Type
- Registry
- Data collection type
- Retrospective, Prospective
- Design
- Longitudinal
- Design description
- Patients with developmental anomalies (dysmorphic / multiple congenitital anomalies syndromes and/or neurodevelopmental disorder
- Start/End data collection
- 2021 (ongoing)
Population
- Countries
- Sweden, Spain, Slovakia, Romania, Portugal, Poland, Norway, Netherlands (the), Lithuania, Latvia, Italy, Ireland, Hungary, Germany, France, Finland, Estonia, Denmark, Czechia, Cyprus, Croatia, Belgium
- Population age groups
- All ages
- Inclusion criteria
- Hospital patient inclusion criterion
- Other inclusion criteria
- Patients with rare (multiple) malformation syndromes and/or neurodevelopmental disorders of genetic, genomic/chromosomal or environmental origin, both diagnosed and undiagnosed.
Organisations
Lead organisations
Additional organisations
- Cyprus Institute of Neurology and Genetics (CING)Cyprushttps://www.cing.ac.cy
Data provider, Data access provider
- Amsterdam University Medical CentersNetherlands (the)https://www.amsterdamumc.org
Data provider, Data access provider
- Hospital Sant Joan de Déu BarcelonaSpainhttp://www.hsjdbcn.org/portal/en/institut-pediatric/inicio
Data provider, Data access provider
- Haukeland University HospitalNorwayhttp://www.helse-bergen.no/no/Sider/default.aspx
Data provider, Data access provider
- IRCCS Azienda Ospedliero-Universitaria di Bologna Policlinico di Sant'Orsola (AOUBO)Italyhttps://www.aosp.bo.it
Data provider, Data access provider
- Centre Hospitalier Universitaire de Bordeaux (CHU)Francehttp://www.chu-bordeaux.fr/
Data provider, Data access provider
- National Institute of Cardiovascular Diseases (NÚSCH)Slovakiahttp://www.nusch.sk/en
Data provider, Data access provider
- Erasmus HospitalBelgiumhttp://www.erasme.ulb.ac.be/page.asp?id=13338&langue=EN
Data provider, Data access provider
- Mater Misericordiae University Hospital (MMUH)Irelandhttp://www.mater.ie/
Data provider, Data access provider
- Düsseldorf University HospitalGermanyhttps://www.uni-duesseldorf.de/home/en/university-hospital.html
Data provider, Data access provider
- Universitätsklinikum ErlangenGermanyhttp://www.uk-erlangen.de/en/
Data provider, Data access provider
- Fondazione IRCCS Istituto Neurologico Carlo BestaItalyhttps://www.istituto-besta.it
Data provider, Data access provider
- University Medical Center Hamburg-Eppendorf (UKE)Germanyhttp://www.uke.de/
Data provider, Data access provider
- Cliniques Universitaires Saint-LucBelgiumhttp://www.saintluc.be/
Data provider, Data access provider
- Helsinki University Hospital (HUCH; HUCS; HUS; HYKS)Finlandhttp://www.hus.fi/en/Pages/default.aspx
Data provider, Data access provider
- Leiden University Medical Center (LUMC)Netherlands (the)https://www.lumc.nl
Data provider, Data access provider
- Hôpital Jeanne de FlandreFrancehttp://www.chru-lille.fr/organisation-structure/hopitaux/98613.html
Data provider, Data access provider
- Centro Hospitalar Lisboa Norte (CHLN)Portugalhttp://www.chln.min-saude.pt/
Data provider, Data access provider
- University Hospital Schleswig-Holstein (UKSH)Germanyhttps://www.uksh.de
Data provider, Data access provider
- Hôpital Femme Mère Enfant (HFME)Francehttps://www.chu-lyon.fr/hopital-femme-mere-enfant
Data provider, Data access provider
- Maastricht University Medical Centre (AZM; MUMC)Netherlands (the)https://www.mumc.nl
Data provider, Data access provider
- Hospital La Paz Institute for Health Research (IDIPAZ)Spainhttp://www.idipaz.es/
Data provider, Data access provider
- University Hospital MagdeburgGermanyhttp://www.med.uni-magdeburg.de/en/Strukturuebersicht.html
Data provider, Data access provider
- Hôpital de la TimoneFrancehttp://fr.ap-hm.fr/nos-hopitaux/hopital-de-la-timone
Data provider, Data access provider
- Fondazione IRCCS Ca' Granda Ospedale Maggiore PoliclinicoItalyhttp://www.policlinico.mi.it/
Data provider, Data access provider
- Centre Hospitalier Universitaire de Montpellier (CHRU MTP)Francehttp://www.chu-montpellier.fr/
Data provider, Data access provider
- University Hospital Münster (UKM)Germanyhttp://klinikum.uni-muenster.de
Data provider, Data access provider
- Federico II University HospitalItalyhttp://www.policlinico.unina.it/flex/cm/pages/ServeBLOB.php/L/IT/IDPagina/1
Data provider, Data access provider
- Radboud University Medical Center (RUNMC)Netherlands (the)https://www.radboudumc.nl
Data provider, Data access provider
- Uniwersytecki Szpital Kliniczny w Olsztynie (USK)Polandhttp://usk-olsztyn.pl/
Data provider, Data access provider
- Oulu University Hospital (OUH; OYKS; OYS)Finlandhttps://www.ppshp.fi/en/Pages/default.aspx
Data provider, Data access provider
- Azienda Ospedale - Università PadovaItalyhttps://www.aopd.veneto.it
Data provider, Data access provider
- Azienda Sanitaria Unità Locale di Reggio EmiliaItalyhttp://www.ausl.re.it/
Data provider, Data access provider
- Centre Hospitalier Universitaire de RennesFrancehttp://www.chu-rennes.fr/sections
Data provider, Data access provider
- Children's Clinical University HospitalLatviahttps://www.bkus.lv/lv
Data provider, Data access provider
- Agostino Gemelli University PolyclinicItalyhttps://www.policlinicogemelli.it/
Data provider, Data access provider
- Bambino Gesù Children's Hospital (OPBG)Italyhttps://www.ospedalebambinogesu.it
Data provider, Data access provider
- Azienda Ospedaliera Universitaria SeneseItalyhttp://www.ao-siena.toscana.it/
Data provider, Data access provider
- Victor Babeș University of Medicine and Pharmacy Timișoara (UMFT)Romaniahttps://www.umft.ro/acasa
Data provider, Data access provider
- University of TübingenGermanyhttps://www.uni-tuebingen.de/en/university.html
Data provider, Data access provider
- Vilnius University Hospital Santariskiu KlinikosLithuaniahttps://www.santa.lt
Data provider, Data access provider
- Children's Memorial Health Institute (CMHI; CZD)Polandhttp://www.czd.pl/index.php?option=com_content&view=article&id=279&Itemid=106
Data provider, Data access provider
- Vall d'Hebron Hospital UniversitariSpainhttps://www.vallhebron.com
Data provider, Data access provider
Data dictionaries
Tables
Tables and their description
| Name | Description | |
|---|---|---|
No results for current selection |
Variables
Variables and their description
| Variable | Table | |
|---|---|---|
No results for current selection |
Networks
Part of networks
Access conditions
- Data access conditions
- disease specific research
- Data use conditions
- project specific restriction
- institution specific restriction
- Data access fee
- false
- Release type
- Continuous
- Prelinked
- true