ERN-CRANIO

Description

General Design

Type

Registry

Data collection type

Retrospective, Prospective

Design

Longitudinal

Read more

Design description

Rare and/or complex craniofacial anomalies and ear, nose and throat (ENT) disorders

Start/End data collection

2021 (ongoing)

Population

Countries

Sweden, Spain, Slovenia, Portugal, Poland, Norway, Netherlands (the), Malta, Lithuania, Latvia, Italy, Ireland, Hungary, Germany, France, Finland, Denmark, Czechia, Belgium, Austria

Population age groups

All ages

Inclusion criteria

Hospital patient inclusion criterion

Read more

Other inclusion criteria

Rare and/or complex craniofacial anomalies and ear, nose and throat (ENT) disorders

Organisations

• Erasmus MC

  Netherlands (the)

  https://www.erasmusmc.nl

  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

• Azienda Ospedale - Università Padova

  Italy

  https://www.aopd.veneto.it

  Data provider, Data access provider

• Meyer Children's Hospital

  Italy

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

  Data provider, Data access provider

• Charité - Universitätsmedizin Berlin

  Germany

  https://www.charite.de

  Data provider, Data access provider

• Temple Street Children's University Hospital

  Ireland

  http://www.cuh.ie/

  Data provider, Data access provider

• Fondazione IRCCS Istituto Neurologico Carlo Besta

  Italy

  https://www.istituto-besta.it

  Data provider, Data access provider

• Agostino Gemelli University Polyclinic

  Italy

  https://www.policlinicogemelli.it/

  Data provider, Data access provider

• Haukeland University Hospital

  Norway

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

  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

• Hôpital Necker-Enfants Malades

  France

  http://hopital-necker.aphp.fr/

  Data provider, Data access provider

• Hôpitaux Universitaires de Strasbourg (HUS)

  France

  http://www.chru-strasbourg.fr/

  Data provider, Data access provider

• Hospices Civils de Lyon (HCL)

  France

  https://www.chu-lyon.fr

  Data provider, Data access provider

• Hospital Universitario 12 De Octubre

  Spain

  https://www.comunidad.madrid/hospital/12octubre/

  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

• Centro Hospitalar Lisboa Norte (CHLN)

  Portugal

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

  Data provider, Data access provider

• Karolinska University Hospital

  Sweden

  http://www.karolinska.se/en

  Data provider, Data access provider

• Mater Dei Hospital (MDH)

  Malta

  http://health.gov.mt/en/MDH/Pages/Home.aspx

  Data provider, Data access provider

• Oslo University Hospital

  Norway

  http://www.oslo-universitetssykehus.no/om-oss/english

  Data provider, Data access provider

• Radboud University Medical Center (RUNMC)

  Netherlands (the)

  https://www.radboudumc.nl

  Data provider, Data access provider

• University of Warmia and Mazury in Olsztyn (UWM)

  Poland

  https://uwm.edu.pl

  Data provider, Data access provider

• Riga Stradiņš University (RSU)

  Latvia

  https://www.rsu.lv

  Data provider, Data access provider

• Rigshospitalet

  Denmark

  https://www.rigshospitalet.dk/

  Data provider, Data access provider

• Sahlgrenska University Hospital

  Sweden

  http://www.sahlgrenskaic.com/medical-care/sahlgrenska-university-hospital/

  Data provider, Data access provider

• Ospedale San Bortolo

  Italy

  http://www.ulssvicenza.it/

  Data provider, Data access provider

• Azienda Ospedaliera San Gerardo

  Italy

  http://hsgerardo.org/

  Data provider, Data access provider

• Ospedale San Paolo

  Italy

  http://www.ao-sanpaolo.it/

  Data provider, Data access provider

• University of Szeged

  Hungary

  http://www.u-szeged.hu/

  Data provider, Data access provider

• University Medical Center Utrecht (UMC)

  Netherlands (the)

  https://www.umcutrecht.nl

  Data provider, Data access provider

• Universitätsklinikum Tübingen (UKT)

  Germany

  https://www.medizin.uni-tuebingen.de/en/Homepage.html

  Data provider, Data access provider

• University Hospital in Motol

  Czechia

  https://www.fnmotol.cz

  Data provider, Data access provider

• University of Salzburg (PLUS)

  Austria

  https://www.plus.ac.at/

  Data provider, Data access provider

• Ljubljana University Medical Centre (UMC)

  Slovenia

  http://www.kclj.si/

  Data provider, Data access provider

• University of Pecs (PTE)

  Hungary

  https://pte.hu

  Data provider, Data access provider

• Uppsala University Hospital

  Sweden

  http://www.akademiska.se/

  Data provider, Data access provider

• Ghent University Hospital

  Belgium

  http://www.uzgent.be/

  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

• Vilnius University Hospital Santariskiu Klinikos

  Lithuania

  https://www.santa.lt

  Data provider, Data access provider

Contributors

• Ern Cranioregistryern-cranioregistry@erasmusmc.nl

  Primary contact

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

Read more

Data use conditions

• project specific restriction

  Read more
• institution specific restriction

  Read more

Data access fee

false

Release type

Continuous

Prelinked

true