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ERN-CRANIO

ERN CRANIO...

Description

Registry focused on the outcome of treatment using standardised diagnosis specific outcome sets (starting with craniosynostosis and cleft lip/palate) - including patient reported outcome measures and outcomes on patients’ quality of life....

General Design

Type
Registry
Cohort type
Clinical cohort
Data collection type
Retrospective, Prospective
Design
Longitudinal
Design description
Rare and/or complex craniofacial anomalies and ear, nose and throat (ENT) disorders
Start/End data collection
2021 (ongoing)

Population

Countries
Austria, France, Germany, Hungary, Ireland, Italy, Latvia, Lithuania, Malta, Netherlands (the), Norway, Czechia, Poland, Portugal, Denmark, Belgium, Finland, Slovenia, Sweden, Spain
Population age groups
All ages
Inclusion criteria
Hospital patient inclusion criterion
Other inclusion criteria
Rare and/or complex craniofacial anomalies and ear, nose and throat (ENT) disorders

Organisations

Lead organisations
  • Erasmus MC 
    Netherlands (the)

    Data provider, Data access provider

Additional organisations
  • Aarhus University Hospital 
    Denmark

    Data provider, Data access provider

  • Amsterdam University Medical Centres 
    Netherlands (the)

    Data provider, Data access provider

  • Antwerp University Hospital 
    Belgium

    Data provider, Data access provider

  • AOP University of Padua 
    Italy

    Data provider, Data access provider

  • AOU Meyer di Firenze 
    Italy

    Data provider, Data access provider

  • Charité Universitätsmedizin Berlin 
    Germany

    Data provider, Data access provider

  • Childrens Health Ireland at Temple Street 
    Ireland

    Data provider, Data access provider

  • Fondazione Istituto Neurologico C.Besta 
    Italy

    Data provider, Data access provider

  • Fondazione Policlinico Universitario A. Gemelli 
    Italy

    Data provider, Data access provider

  • Haukeland University Hospital Helse Bergen HF 
    Norway

    Data provider, Data access provider

  • Helsinki University Hospital 
    Finland

    Data provider, Data access provider

  • Hópital Universitaire Necker Enfants-Malades 
    France

    Data provider, Data access provider

  • Hopitaux universitaires de Strasbourg 
    France

    Data provider, Data access provider

  • Hospices Civils de Lyon 
    France

    Data provider, Data access provider

  • Hospital 12 de Octubre 
    Spain

    Data provider, Data access provider

  • Hospital de Sant Joan de Déu 
    Spain

    Data provider, Data access provider

  • Hospital de Santa Maria, Centro Hospitalar Lisboa Norte 
    Portugal

    Data provider, Data access provider

  • Karolinska University Hospital 
    Sweden

    Data provider, Data access provider

  • Mater Dei Hospital 
    Malta

    Data provider, Data access provider

  • Oslo University Hospital 
    Norway

    Data provider, Data access provider

  • Radboud MC 
    Netherlands (the)

    Data provider, Data access provider

  • Regional specialised children's hospital, Olsztyn. Poland 
    Poland

    Data provider, Data access provider

  • Riga Cleft Lip and Palate Centre, Latvia 
    Latvia

    Data provider, Data access provider

  • Rigshospitalet, Copenhagen University Hospital 
    Denmark

    Data provider, Data access provider

  • Sahlgrenska University Hospital 
    Sweden

    Data provider, Data access provider

  • San Bortolo Hospital 
    Italy

    Data provider, Data access provider

  • San Gerardo Hospital 
    Italy

    Data provider, Data access provider

  • Smile House, San Paolo Hospital 
    Italy

    Data provider, Data access provider

  • Szent-Györgyi Albert Medical Center, University of Szeged 
    Hungary

    Data provider, Data access provider

  • UMC Utrecht 
    Netherlands (the)

    Data provider, Data access provider

  • Universitätsklinikum Tübingen 
    Germany

    Data provider, Data access provider

  • University Hospital Motol 
    Czechia

    Data provider, Data access provider

  • University Hospital Salzburg 
    Austria

    Data provider, Data access provider

  • University Medical Centre Ljubljana 
    Slovenia

    Data provider, Data access provider

  • University of Pecs 
    Hungary

    Data provider, Data access provider

  • Uppsala University Hospital 
    Sweden

    Data provider, Data access provider

  • UZ Gent 
    Belgium

    Data provider, Data access provider

  • UZ Leuven 
    Belgium

    Data provider, Data access provider

  • Vall d'Hebron 
    Spain

    Data provider, Data access provider

  • Vilnius University Hospital Santaros Klinikos, Ear, Nose and Throat Center 
    Lithuania

    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