ILIAD

Description

General Design

Type

Registry

Data collection type

Retrospective, Prospective

Design

Longitudinal

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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

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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

• Hôpital Robert-Debré

  France

  http://robertdebre.aphp.fr/

  Data provider, Data access provider

• Cyprus Institute of Neurology and Genetics (CING)

  Cyprus

  https://www.cing.ac.cy

  Data provider, Data access provider

• Aarhus University Hospital

  Denmark

  http://www.en.auh.dk/

  Data provider, Data access provider

• Amsterdam University Medical Centers

  Netherlands (the)

  https://www.amsterdamumc.org

  Data provider, Data access provider

• Antwerp University Hospital (UZA)

  Belgium

  https://www.uza.be

  Data provider, Data access provider

• Hospital Sant Joan de Déu Barcelona

  Spain

  http://www.hsjdbcn.org/portal/en/institut-pediatric/inicio

  Data provider, Data access provider

• Haukeland University Hospital

  Norway

  http://www.helse-bergen.no/no/Sider/default.aspx

  Data provider, Data access provider

• IRCCS Azienda Ospedliero-Universitaria di Bologna Policlinico di Sant'Orsola (AOUBO)

  Italy

  https://www.aosp.bo.it

  Data provider, Data access provider

• Centre Hospitalier Universitaire de Bordeaux (CHU)

  France

  http://www.chu-bordeaux.fr/

  Data provider, Data access provider

• National Institute of Cardiovascular Diseases (NÚSCH)

  Slovakia

  http://www.nusch.sk/en

  Data provider, Data access provider

• Erasmus Hospital

  Belgium

  http://www.erasme.ulb.ac.be/page.asp?id=13338&langue=EN

  Data provider, Data access provider

• University of Coimbra

  Portugal

  https://www.uc.pt

  Data provider, Data access provider

• University of Copenhagen (UCPH)

  Denmark

  https://www.ku.dk

  Data provider, Data access provider

• University of Debrecen

  Hungary

  https://unideb.hu

  Data provider, Data access provider

• CHU Dijon Bourgogne

  France

  https://www.chu-dijon.fr

  Data provider, Data access provider

• Mater Misericordiae University Hospital (MMUH)

  Ireland

  http://www.mater.ie/

  Data provider, Data access provider

• Düsseldorf University Hospital

  Germany

  https://www.uni-duesseldorf.de/home/en/university-hospital.html

  Data provider, Data access provider

• Universitätsklinikum Erlangen

  Germany

  http://www.uk-erlangen.de/en/

  Data provider, Data access provider

• Essen University Hospital

  Germany

  https://www.uk-essen.de

  Data provider, Data access provider

• University of Ferrara

  Italy

  https://www.unife.it

  Data provider, Data access provider

• Meyer Children's Hospital

  Italy

  http://www.meyer.it/index.php/en/

  Data provider, Data access provider

• Fondazione IRCCS Istituto Neurologico Carlo Besta

  Italy

  https://www.istituto-besta.it

  Data provider, Data access provider

• Gdańsk Medical University (MUG)

  Poland

  http://mug.edu.pl/

  Data provider, Data access provider

• Istituto Giannina Gaslini

  Italy

  http://www.gaslini.org/

  Data provider, Data access provider

• Ghent University

  Belgium

  https://www.ugent.be

  Data provider, Data access provider

• Universitätsmedizin Göttingen (UMG)

  Germany

  https://www.umg.eu/

  Data provider, Data access provider

• University of Groningen

  Netherlands (the)

  http://www.rug.nl/

  Data provider, Data access provider

• University Medical Center Hamburg-Eppendorf (UKE)

  Germany

  http://www.uke.de/

  Data provider, Data access provider

• Cliniques Universitaires Saint-Luc

  Belgium

  http://www.saintluc.be/

  Data provider, Data access provider

• Helsinki University Hospital (HUCH; HUCS; HUS; HYKS)

  Finland

  http://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 Flandre

  France

  http://www.chru-lille.fr/organisation-structure/hopitaux/98613.html

  Data provider, Data access provider

• Centro Hospitalar Lisboa Norte (CHLN)

  Portugal

  http://www.chln.min-saude.pt/

  Data provider, Data access provider

• University Hospital Schleswig-Holstein (UKSH)

  Germany

  https://www.uksh.de

  Data provider, Data access provider

• Hôpital Femme Mère Enfant (HFME)

  France

  https://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)

  Spain

  http://www.idipaz.es/

  Data provider, Data access provider

• University Hospital Magdeburg

  Germany

  http://www.med.uni-magdeburg.de/en/Strukturuebersicht.html

  Data provider, Data access provider

• Hôpital de la Timone

  France

  http://fr.ap-hm.fr/nos-hopitaux/hopital-de-la-timone

  Data provider, Data access provider

• Fondazione IRCCS Ca' Granda Ospedale Maggiore Policlinico

  Italy

  http://www.policlinico.mi.it/

  Data provider, Data access provider

• Centre Hospitalier Universitaire de Montpellier (CHRU MTP)

  France

  http://www.chu-montpellier.fr/

  Data provider, Data access provider

• University Hospital Münster (UKM)

  Germany

  http://klinikum.uni-muenster.de

  Data provider, Data access provider

• Federico II University Hospital

  Italy

  http://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

• University of Southern Denmark (SDU)

  Denmark

  https://www.sdu.dk

  Data provider, Data access provider

• Uniwersytecki Szpital Kliniczny w Olsztynie (USK)

  Poland

  http://usk-olsztyn.pl/

  Data provider, Data access provider

• Oulu University Hospital (OUH; OYKS; OYS)

  Finland

  https://www.ppshp.fi/en/Pages/default.aspx

  Data provider, Data access provider

• Azienda Ospedale - Università Padova

  Italy

  https://www.aopd.veneto.it

  Data provider, Data access provider

• University of Pecs (PTE)

  Hungary

  https://pte.hu

  Data provider, Data access provider

• University Hospital in Motol

  Czechia

  https://www.fnmotol.cz

  Data provider, Data access provider

• Azienda Sanitaria Unità Locale di Reggio Emilia

  Italy

  http://www.ausl.re.it/

  Data provider, Data access provider

• Centre Hospitalier Universitaire de Rennes

  France

  http://www.chu-rennes.fr/sections

  Data provider, Data access provider

• Children's Clinical University Hospital

  Latvia

  https://www.bkus.lv/lv

  Data provider, Data access provider

• Agostino Gemelli University Polyclinic

  Italy

  https://www.policlinicogemelli.it/

  Data provider, Data access provider

• Bambino Gesù Children's Hospital (OPBG)

  Italy

  https://www.ospedalebambinogesu.it

  Data provider, Data access provider

• Erasmus MC

  Netherlands (the)

  https://www.erasmusmc.nl

  Data provider, Data access provider

• Azienda Ospedaliera Universitaria Senese

  Italy

  http://www.ao-siena.toscana.it/

  Data provider, Data access provider

• Tartu University Hospital

  Estonia

  https://www.kliinikum.ee

  Data provider, Data access provider

• Victor Babeș University of Medicine and Pharmacy Timișoara (UMFT)

  Romania

  https://www.umft.ro/acasa

  Data provider, Data access provider

• University of Turin (UNITO)

  Italy

  https://www.unito.it

  Data provider, Data access provider

• University of Tübingen

  Germany

  https://www.uni-tuebingen.de/en/university.html

  Data provider, Data access provider

• Vilnius University Hospital Santariskiu Klinikos

  Lithuania

  https://www.santa.lt

  Data provider, Data access provider

• Children's Memorial Health Institute (CMHI; CZD)

  Poland

  http://www.czd.pl/index.php?option=com_content&view=article&id=279&Itemid=106

  Data provider, Data access provider

• Children's Hospital Zagreb

  Croatia

  http://www.kdb.hr/

  Data provider, Data access provider

• Universitair Ziekenhuis Leuven

  Belgium

  https://www.uzleuven.be/en

  Data provider, Data access provider

• Vall d'Hebron Hospital Universitari

  Spain

  https://www.vallhebron.com

  Data provider, Data access provider

• Karolinska University Hospital

  Sweden

  http://www.karolinska.se/en

  Data provider, Data access provider

Dataset variables

Networks

• 

  Rare Disease Network

  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 po ...

  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 po... ...

  Network detailsCatalogue

Access conditions

Data access conditions

disease specific research

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Data use conditions

• project specific restriction

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• institution specific restriction

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Data access fee

false

Release type

Continuous

Prelinked

true