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 detailsCatalogueERRAS
ERN SKIN
Description
ERN SKIN covers the medical field of rare, complex and undiagnosed skin disorders in children and adults. Most of them are exclusively cutaneous/sub-cutaneous and often present a severe prognosis, because of the intensity of the cutaneous/mucosal involvement, the risk of cancer for some of them, or the frequent multisystemic involvement directly or secondary to skin damages.
General Design
- Type
- Registry
- Data collection type
- Retrospective, Prospective
- Design
- Longitudinal
- Design description
- Medical field of rare, complex and undiagnosed skin disorders in children and adults.
- Start/End data collection
- 2021 (ongoing)
Population
- Countries
- Sweden, Spain, Slovenia, Romania, Netherlands (the), Malta, Luxembourg, Lithuania, Latvia, Italy, Ireland, Hungary, Germany, France, Finland, Denmark, Czechia, Croatia, Belgium, Austria
- Population age groups
- All ages
- Inclusion criteria
- Hospital patient inclusion criterion
- Other inclusion criteria
- Rare and complex dermatological diseases
Organisations
Lead organisations
- Centre Hospitalier Universitaire Henri-MondorFrancehttp://chu-mondor.aphp.fr/
Data provider, Data access provider
Additional organisations
- Hôpital Charles-NicolleFrancehttps://www.chu-rouen.fr/hopital_charles_nicolle/
Data provider, Data access provider
- Centre Hospitalier Universitaire de ToulouseFrancehttp://www.chu-toulouse.fr/
Data provider, Data access provider
- Azienda Socio Sanitaria Territoriale degli Spedali Civili di BresciaItalyhttps://www.asst-spedalicivili.it
Data provider, Data access provider
- Spitalul Clinic ColentinaRomaniahttp://www.spitalul-colentina.ro/scc-en/hospital_colentina.htm
Data provider, Data access provider
- Amsterdam UMC Location University of Amsterdam (AMC)Netherlands (the)https://www.amc.nl
Data provider, Data access provider
- Azienda Ospedaliera Citta' della Salute e della Scienza di TorinoItalyhttps://www.cittadellasalute.to.it/
Data provider, Data access provider
- Azienda Ospedaliero-Universitaria di ModenaItalyhttps://www.aou.mo.it
Data provider, Data access provider
- Azienda Usl Toscana CentroItalyhttps://www.uslcentro.toscana.it/
Data provider, Data access provider
- Hôpital Necker-Enfants MaladesFrancehttp://hopital-necker.aphp.fr/
Data provider, Data access provider
- Centre Hospitalier de Luxembourg (CHL)Luxembourghttps://www.chl.lu/
Data provider, Data access provider
- Children's Clinical University HospitalLatviahttps://www.bkus.lv/lv
Data provider, Data access provider
- Centre Hospitalier Universitaire de Bordeaux (CHU)Francehttp://www.chu-bordeaux.fr/
Data provider, Data access provider
- Centre Hospitalier Universitaire de NiceFrancehttp://www.chu-nice.fr/
Data provider, Data access provider
- Semmelweis UniversityHungaryhttp://semmelweis.hu/english/the-university/
Data provider, Data access provider
- Fondazione IRCCS Ca' Granda Ospedale Maggiore PoliclinicoItalyhttp://www.policlinico.mi.it/
Data provider, Data access provider
- Casa Sollievo della SofferenzaItalyhttp://www.operapadrepio.it/en/
Data provider, Data access provider
- Agostino Gemelli University PolyclinicItalyhttps://www.policlinicogemelli.it/
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
- Erasmus HospitalBelgiumhttp://www.erasme.ulb.ac.be/page.asp?id=13338&langue=EN
Data provider, Data access provider
- Lithuanian University of Health Sciences (LSMU)Lithuaniahttps://lsmu.lt
Data provider, Data access provider
- Istituto Dermopatico dell'Immacolata (IDI)Italyhttp://www.idi.it/
Data provider, Data access provider
- Maastricht University Medical Centre (AZM; MUMC)Netherlands (the)https://www.mumc.nl
Data provider, Data access provider
- Mater Dei Hospital (MDH)Maltahttp://health.gov.mt/en/MDH/Pages/Home.aspx
Data provider, Data access provider
- Innsbruck Medical University (MUI)Austriahttps://www.i-med.ac.at/mypoint/
Data provider, Data access provider
- Bambino Gesù Children's Hospital (OPBG)Italyhttps://www.ospedalebambinogesu.it
Data provider, Data access provider
- St. Anne's University Hospital Brno (FNUSA)Czechiahttps://www.fnusa.cz
Data provider, Data access provider
- Hospital Sant Joan de Déu BarcelonaSpainhttp://www.hsjdbcn.org/portal/en/institut-pediatric/inicio
Data provider, Data access provider
- Städtisches Klinikum DessauGermanyhttp://www.klinikum-dessau.de/
Data provider, Data access provider
- Universitätsklinikum ErlangenGermanyhttp://www.uk-erlangen.de/en/
Data provider, Data access provider
- University Medical Center FreiburgGermanyhttp://www.uniklinik-freiburg.de/en/uniklinikum.html
Data provider, Data access provider
- University Medical Center FreiburgGermanyhttp://www.uniklinik-freiburg.de/en/uniklinikum.html
Data provider, Data access provider
- University Hospital Münster (UKM)Germanyhttp://klinikum.uni-muenster.de
Data provider, Data access provider
- University Hospital Regensburg (UKR)Germanyhttp://www.uniklinikum-regensburg.de/e/
Data provider, Data access provider
- Universitätsmedizin RostockGermanyhttp://www.med.uni-rostock.de/
Data provider, Data access provider
- University Hospital Centre Zagreb (KBC)Croatiahttps://www.kbc-zagreb.hr
Data provider, Data access provider
- University Hospital Kralovske Vinohrady (FNKV)Czechiahttp://www.fnkv.cz/
Data provider, Data access provider
- Azienda Ospedale - Università PadovaItalyhttps://www.aopd.veneto.it
Data provider, Data access provider
- University Medical Center Utrecht (UMC)Netherlands (the)https://www.umcutrecht.nl
Data provider, Data access provider
- University Medical Center Groningen (UMCG)Netherlands (the)https://www.umcg.nl
Data provider, Data access provider
- Ljubljana University Medical Centre (UMC)Sloveniahttp://www.kclj.si/
Data provider, Data access provider
- Zealand University Hospital (ZUH)Denmarkhttp://www.regionsjaelland.dk/kampagner/english/hospitals/zuh/sider/default.aspx
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