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ILIAD

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 ...

General Design

Type
Registry
Cohort type
Clinical cohort
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
Croatia, Estonia, France, Germany, Hungary, Ireland, Italy, Latvia, Lithuania, Netherlands (the), Norway, Czechia, Poland, Portugal, Cyprus, Denmark, Belgium, Finland, Romania, Slovakia, Sweden, Spain
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
  • Paris Center (Robert Debré University Hospital) 
    France

    Data provider, Data access provider

Additional organisations
  • Aarhus Center 
    Denmark

    Data provider, Data access provider

  • Amsterdam University Medical Centers 
    Netherlands (the)

    Data provider, Data access provider

  • Antwerpen Center 
    Belgium

    Data provider, Data access provider

  • Barcelona San Joan de Déu Center 
    Spain

    Data provider, Data access provider

  • Barcelona Val d’Hebron Center 
    Spain

    Data provider, Data access provider

  • Bergen Center 
    Norway

    Data provider, Data access provider

  • Bologna Center 
    Italy

    Data provider, Data access provider

  • Bordeaux Center 
    France

    Data provider, Data access provider

  • Bratislava Center 
    Slovakia

    Data provider, Data access provider

  • Brussels Center (Erasme) 
    Belgium

    Data provider, Data access provider

  • Coimbra Center 
    Portugal

    Data provider, Data access provider

  • Copenhagen Center 
    Denmark

    Data provider, Data access provider

  • Cyprus Center 
    Cyprus

    Data provider, Data access provider

  • Debrecen Center 
    Hungary

    Data provider, Data access provider

  • Dijon Center 
    France

    Data provider, Data access provider

  • Dublin Center 
    Ireland

    Data provider, Data access provider

  • Düsseldorf Center 
    Germany

    Data provider, Data access provider

  • Erlangen Center 
    Germany

    Data provider, Data access provider

  • Essen Center 
    Germany

    Data provider, Data access provider

  • Ferrara Center 
    Italy

    Data provider, Data access provider

  • Florence Center 
    Italy

    Data provider, Data access provider

  • Fondazione IRCCS Istituto Neurologico Carlo Besta di Milano 
    Italy

    Data provider, Data access provider

  • Gdansk Center 
    Poland

    Data provider, Data access provider

  • Genoa Center 
    Italy

    Data provider, Data access provider

  • Ghent Center 
    Belgium

    Data provider, Data access provider

  • Göttingen Center 
    Germany

    Data provider, Data access provider

  • Groningen Center 
    Netherlands (the)

    Data provider, Data access provider

  • Hambourg Center 
    Germany

    Data provider, Data access provider

  • HCP Brussels (Saint Luc) + Gosselies (consortium) 
    Belgium

    Data provider, Data access provider

  • Helsinki Center 
    Finland

    Data provider, Data access provider

  • Leiden Center 
    Netherlands (the)

    Data provider, Data access provider

  • Lille Center 
    France

    Data provider, Data access provider

  • Lisboa Center 
    Portugal

    Data provider, Data access provider

  • Lübeck Center 
    Germany

    Data provider, Data access provider

  • Lyon Center 
    France

    Data provider, Data access provider

  • Maastricht Center 
    Netherlands (the)

    Data provider, Data access provider

  • Madrid La Paz Center 
    Spain

    Data provider, Data access provider

  • Magdeburg Center 
    Germany

    Data provider, Data access provider

  • Marseille Center 
    France

    Data provider, Data access provider

  • Milan Center (Fondazione IRCCS Ca’ Granda) 
    Italy

    Data provider, Data access provider

  • Montpellier Center 
    France

    Data provider, Data access provider

  • Munster Center 
    Germany

    Data provider, Data access provider

  • Naples Center 
    Italy

    Data provider, Data access provider

  • Nijmegen Center 
    Netherlands (the)

    Data provider, Data access provider

  • Odense Center 
    Denmark

    Data provider, Data access provider

  • Olsztyn Center 
    Poland

    Data provider, Data access provider

  • Oulu Center 
    Finland

    Data provider, Data access provider

  • Padua Center 
    Italy

    Data provider, Data access provider

  • Pècs Centre 
    Hungary

    Data provider, Data access provider

  • Prague Center 
    Czechia

    Data provider, Data access provider

  • Reggio Emilia Center 
    Italy

    Data provider, Data access provider

  • Rennes Center 
    France

    Data provider, Data access provider

  • Riga Center 
    Latvia

    Data provider, Data access provider

  • Rome (Gemelli) Center 
    Italy

    Data provider, Data access provider

  • Rome (OPBG) Center 
    Italy

    Data provider, Data access provider

  • Rotterdam Center 
    Netherlands (the)

    Data provider, Data access provider

  • Siena Center 
    Italy

    Data provider, Data access provider

  • Stockholm Center 
    Sweden

    Data provider, Data access provider

  • Tartu Center 
    Estonia

    Data provider, Data access provider

  • Timisoara Center (Ro-NMCA-ID) 
    Romania

    Data provider, Data access provider

  • Torino Center 
    Italy

    Data provider, Data access provider

  • Tübingen Center 
    Germany

    Data provider, Data access provider

  • University Hospital Leuven 
    Belgium

    Data provider, Data access provider

  • Vilnius Center 
    Lithuania

    Data provider, Data access provider

  • Warszawa Center 
    Poland

    Data provider, Data access provider

  • Zagreb Center 
    Croatia

    Data provider, Data access provider

Dataset variables

Datasets
Datasets and their description
No results for current selection
Dataset variables
Dataset variables and their description
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

Created with MOLGENIS