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125 Ergebnis(se)

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Förderung durch ein IRDiRC-Mitglied = ERN-Mitglied =

Register und Biobanken

BELGIEN

ARRONDISSEMENT BRUSSELS-CAPITAL
BRUSSELS

Belgian registry of primary immunodeficiencies - contribution to the ESID registry
Cliniques Universitaires de Bruxelles - Hôpital Erasme
Unité de Traitment des Immunodéficiences

BELGIEN

OOST-VLAANDEREN
GENT

Belgian registry of primary immunodeficiencies - contribution to the ESID registry
Ghent University Hospital - UZ Gent
Centrum voor primaire immuunstoornissen - UZ Gent (CPIG)

BELGIEN

OOST-VLAANDEREN
GENT

A biobank of patients with Primary Immune Deficiencies (PID)
PID research lab (PIRL), UZ Gent - MRBII - Entrance 38
Center for Primary Immunodeficiencies Ghent, Jeffrey Modell Foundation diagnostic and research center

BELGIEN

VLAAMS BRABANT
LEUVEN

Belgian registry of primary immunodeficiencies - contribution to the ESID registry
UZ Leuven - Campus Gasthuisberg
Centre for Rare Immune Deficiency, Autoimmune and Autoinflammatory Diseases - UZ Leuven

BULGARIEN

 South-West region
SOFIA

DEUTSCHLAND

Baden-Württemberg
FREIBURG

Förderung durch ein IRDiRC-MitgliedPID-NET: Deutsches Nationales Patientenregister für primäre Immundefekte
CCI am Universitätsklinikum Freiburg
Centrum für Chronische Immundefizienz

DEUTSCHLAND

Baden-Württemberg
FREIBURG

Förderung durch ein IRDiRC-MitgliedPID-NET: Deutsches Nationales Patientenregister für primäre Immundefekte
CCI am Universitätsklinikum Freiburg
ESID-Registry

DEUTSCHLAND

Bayern
MÜNCHEN

PID-NET: Dezentrale nationale Biobank für primäre Immundefekt-Syndrome
Kinderklinik und Kinderpoliklinik im Dr. von Haunerschen Kinderspital
Care-for-Rare Center (CRCHauner)

FRANKREICH

ILE-DE-FRANCE
PARIS

SCETIDE - Stem CEll Transplant for primary Immune Deficiencies in Europe
Hôpital Necker-Enfants Malades
Registre européen des greffes de moelle osseuse pour immunodéficience primaire

IRLAND

County Dublin
DUBLIN

ITALIEN

LIGURIA
GENOVA

Förderung durch ein IRDiRC-MitgliedERN [RITA] - MERITA: A METADATA REGISTRY FOR THE ERN RITA
IRCCS Istituto G. Gaslini - Ospedale Pediatrico
U.O. Pediatria II

POLEN

Warszawa
WARSAW

Polish registry of primary immunodeficiencies - contributes to the ESID European registry
Instytut "Pomnik-Centrum Zdrowia Dziecka"
Klinika Immunologii

PORTUGAL

NORTE
PORTO

Portuguese registry of primary immunodeficiency diseases (REPORID)
Centro Hospitalar Universitário de Santo António, EPE - Hospital Santo António
Centro Coordenador do REPORID

SCHWEDEN

Region Stockholm
ADDRESS: NOT PROVIDED - SE

PIDcare: National registry of Primary immunodeficiencies
Institution: Information not provided - SE
Regional Registry Centre, South East Sweden

SPANIEN

Baleares
PALMA DE MALLORCA

BELGIEN

ARRONDISSEMENT BRUSSELS-CAPITAL
BRUSSELS

CRRD: Central Registry of Rare Diseases
Sciensano
Health Services Research - Rare Diseases

DEUTSCHLAND

Niedersachsen
HANNOVER

FRANKREICH

ILE-DE-FRANCE
PARIS

French National Registry for Rare Diseases (BNDMR)
AP-HP Campus Picpus - Département WIND (Web Innovation Données)
Banque Nationale de Données Maladies Rares (BNDMR)

ITALIEN

LAZIO
ROMA

FMF: Italian registry for familial mediterranean fever in the young
Fondazione Policlinico Universitario Agostino Gemelli IRCCS
Centro delle Febbri Periodiche - Istituto di Medicina Interna

ITALIEN

LAZIO
ROMA

Italian Registry of adult patients affected by familial mediterranean fever
Fondazione Policlinico Universitario Agostino Gemelli IRCCS
Centro delle Febbri Periodiche - Istituto di Medicina Interna

ITALIEN

LAZIO
ROMA

RNMR: Italian National Rare Diseases Registry
ISS - Istituto Superiore di Sanitŕ
Centro Nazionale Malattie Rare

ITALIEN

LAZIO
ROMA

INMI Biobank
Istituto Nazionale per le Malattie Infettive "Lazzaro Spallanzani"
U.O.C. Microbiologia e Banca Biologica

ITALIEN

TOSCANA
PISA

Tuscan Registry of Rare Diseases
Fondazione "Gabriele Monasterio" - Consiglio Nazionale delle Ricerche CNR
Fondazione Toscana Gabriele Monasterio

ITALIEN

VENETO
PADOVA

Rare Diseases Registry - Veneto Region
Azienda Ospedaliera di Padova
Coordinamento Malattie Rare Regione del Veneto

NIEDERLANDE

Utrecht
NIEUWEGEIN

Förderung durch ein IRDiRC-MitgliedBiobank of Interstitial Lung Diseases (DNA/serum/plasma/BAL fluid)
St. Antonius Ziekenhuis, locatie Nieuwegein
Longcentrum

OSTERREICH

STEIERMARK
GRAZ

Hautkrebssyndrom-Register Graz
Medizinische Universität Graz
Universitätsklinik für Dermatologie und Venerologie

SCHWEDEN

Region Skĺne
LUND

SCHWEDEN

Region Skĺne
LUND

IFNGR1base: Mutation registry for IFN gamma 1-receptor deficiency
Lunds Universitet
Department of Experimental Medical Science

SCHWEDEN

Region Skĺne
LUND

IFNGR2base: Mutation registry for IFN gamma 2-receptor deficiency
Lunds Universitet
Department of Experimental Medical Science

SCHWEDEN

Region Skĺne
LUND

IL12Bbase: Mutation registry for Interleukin-12 (IL-12) p40 deficiency
Lunds Universitet
Department of Experimental Medical Science

SCHWEDEN

Region Skĺne
LUND

IL12RB1base: Mutation registry for Interleukin-12 receptor á1 deficiency
Lunds Universitet
Department of Experimental Medical Science

SCHWEDEN

Region Skĺne
LUND

IRAK4base: Mutation registry for IRAK4 deficiency
Lunds Universitet
Department of Experimental Medical Science

SCHWEDEN

Region Skĺne
LUND

STAT1base: Mutation registry for STAT1 deficiency
Lunds Universitet
Department of Experimental Medical Science

SCHWEDEN

Region Skĺne
LUND

SCHWEDEN

Region Skĺne
LUND

SCHWEDEN

Region Skĺne
LUND

TLR3base: Mutation registry for Influenza-associated encephalopathy
Lunds Universitet
Department of Experimental Medical Science

SCHWEDEN

Region Skĺne
LUND

UNC93B1base: Mutation registry for UNC93B deficiency (Herpes simplex encephalitis)
Lunds Universitet
Department of Experimental Medical Science

SCHWEIZ

Suisse Alémanique
BASEL

SCHWEIZ

Suisse Alémanique
BERN

Schweizer Register für seltene Krankheiten (SRSK)
Institute of Social and Preventive Medicine (ISPM)

SCHWEIZ

Suisse Alémanique
ZÜRICH

Schweizer Register für seltene Krankheiten (SRSK)
Universitäts - Kinderspital Zürich - Eleonorenstiftung
Abteilung für Stoffwechselkrankheiten

SPANIEN

Andalucía
SEVILLA

Registry for rare diseases in Andalusia (Spain)
Junta de Andalucía. Consejería de Salud y Bienestar Social
Subdirección Técnica Asesora de Gestión de la Información

SPANIEN

Aragón
ZARAGOZA

Förderung durch ein IRDiRC-MitgliedRare disease registry of Aragon (Spain)
Gobierno de Aragón. Departamento de Sanidad
Servicio de Evaluación y Acreditación Sanitaria

SPANIEN

Cantabria
SANTANDER

Population registry of rare diseases and congenital anomalies of Cantabria (Spain)
Gobierno de Cantabria. Consejería de Sanidad y Servicios Sociales
Servicio de Atención Sanitaria

SPANIEN

Comunidad Valenciana
VALENCIA

SIER-CV: Information System on rare diseases in Valencian Community (Spain)
Generalitat Valenciana. Conselleria de Sanitat Universal i Salut Pública
Servicio de Estudios Epidemiológicos y Vigilancia de Enfermedades No Transmisibles

SPANIEN

Extremadura
MÉRIDA

Registry for rare diseases in Extremadura (Spain)
Junta de Extremadura. Servicio Extremeńo de Salud
Subdirector de Epidemiología

SPANIEN

Galicia
LUGO

SPANIEN

Galicia
SANTIAGO DE COMPOSTELA

RERGA: Registry for rare diseases in Galicia (Spain)
Servicio Gallego de Salud
Servicio de Atención Hospitalaria

SPANIEN

Madrid
MADRID

Förderung durch ein IRDiRC-MitgliedRePER: Rare Diseases Patient Registry
ISCIII - Instituto de Salud Carlos III
Instituto de Investigación de Enfermedades Raras

SPANIEN

Madrid
MADRID

REPA: Spanish registry of alveolar proteinosis integrated in the Rare Diseases Patient Registry ISCIII (RePER)
ISCIII - Instituto de Salud Carlos III
Instituto de Investigación de Enfermedades Raras

SPANIEN

Murcia
MURCIA

SIERrm: Information System on rare diseases in the Region of Murcia (Spain)
Región de Murcia. Consejería de Sanidad y Política Social
Servicio de Planificación y Financiación Sanitaria

SPANIEN

Navarra
PAMPLONA

RERNA: Population-based Rare Disease Registry of Navarre (Spain)
Instituto de Salud Pública y Laboral de Navarra
Observatorio de la Salud Comunitaria

SPANIEN

País Vasco
BARAKALDO

Förderung durch ein IRDiRC-MitgliedBasque Biobank
BIOEF - Fundación Vasca de Innovación e Investigación Sanitarias
Biobanco Vasco

SPANIEN

País Vasco
VITORIA-GASTEIZ

Rare Diseases Registry of the Basque Country
Gobierno Vasco. Departamento de Salud
Registro de Enfermedades Raras de la Comunidad Autónoma de Euskadi

VEREINIGTE STAATEN

South Dakota
SIOUX FALLS

VEREINIGTE STAATEN

Washington
BETHESDA

Förderung durch ein IRDiRC-MitgliedThe NIH/NCATS GRDR® Program
NCATS National Institute of Health

BELGIEN

OOST-VLAANDEREN
GENT

Belgian severe chronic neutropenia patient registry - contributes to the Severe Chronic Neutropenia International Registry (SCNIR)
Kinderziekenhuis Prinses Elisabeth - UZ Gent
Pediatric Hematology-Oncology and Stem Cell Transplantation/Afdeling Hemato-oncologie en stamceltransplantatie kinderen

DEUTSCHLAND

Niedersachsen
HANNOVER

Förderung durch ein IRDiRC-MitgliedSCNIR - Neutropenie Zellbank
Medizinische Hochschule Hannover
SCNIR - Europazentrale

ESTLAND

Tartu
TARTU

Biobank of the Estonian Genome Centre
Institute of Genomics of University of Tartu
The Estonian Genome Centre

FRANKREICH

ILE-DE-FRANCE
PARIS

French severe chronic neutropenia certified patient registry - contributes to the SCN international registry (SCNIR)
AP-HP.Sorbonne Université - Hôpital d'Enfants Armand-Trousseau
Service d'Hématologie - Oncologie pédiatrique

GRIECHENLAND

ATTIKI
ATHENS

IRLAND

County Dublin
DUBLIN

Irish severe chronic neutropenia registry - contributes to the SCN international registry (SCNIR)
Children's Health Ireland @ Temple Street
Department of Haematology

ISRAEL

ISRAEL
PETAH TIKVA

Israelian severe chronic neutropenia registry - contributes to the SCN international registry (SCNIR)
Schneider Children's Medical Center of Israel
Pediatric Hematology Unit

ITALIEN

LIGURIA
GENOVA

Förderung durch ein IRDiRC-MitgliedTelethon Network of Genetic Biobanks
IRCCS Istituto G. Gaslini - Ospedale Pediatrico
Centro di diagnostica genetica e biochimica delle malattie metaboliche

ITALIEN

LIGURIA
GENOVA

Genetic Biobank of the Human Genetics Laboratory (BGU-IGG)
IRCCS Istituto G. Gaslini - Ospedale Pediatrico
U.O.C. Laboratorio di Genetica Umana

ITALIEN

SICILIA
PALERMO

SCNIR: Italian severe chronic neutropenia registry - contributes to the SCN international registry
A.O. Civico - Di Cristina - Benfratelli
Oncoematologia Pediatrica

ITALIEN

VENETO
VERONA

RI-SDS: Italian Registry of Shwachman Diamond Syndrome
Azienda Ospedaliera Universitaria Integrata di Verona - Ospedale Borgo Trento
Centro Fibrosi Cistica

MAROKKO

Rabat
RABAT

Moroccan National Genetic Database
Institut National d'Hygične
Département de génétique médicale

NIEDERLANDE

Utrecht
UTRECHT

Dutch severe chronic neutropenia registry - contributes to the SCN international registry (SCNIR)
UMC Utrecht - Universitair Medisch Centrum Utrecht
Polikliniek Hematologie

NORWEGEN

Řstlandet
OSLO

Norwegian severe chronic neutropenia registry - contributes to the SCN international registry (SCNIR)
Oslo University Hospital, Rikshospitalet
Barne- og ungdomsklinikken

NORWEGEN

Řstlandet
OSLO

Norwegian registry on rare disorders
Oslo University Hospital, Ullevaal
Norsk register for sjeldne diagnoser

OSTERREICH

OBERÖSTERREICH
LINZ

Austrian severe chronic neutropenia patient registry - contributes to the SCN international registry (SCNIR)
Kepler Universitätsklinikum - Med Campus IV.
Zentrum für Medizinische Genetik

OSTERREICH

TIROL
INNSBRUCK

Austrian Country Node of the Human Variome Project (HVP)
Medizinische Universität Innsbruck
Zentrum Medizinische Genetik Innsbruck

POLEN

Wroclaw
WROCLAW

Polish severe chronic neutropenia registry - contributes to the SCN international registry (SCNIR)
Ponadregionalne Centrum Onkologii Dzieciecej PRZYLADEK NADZIEI
Klinika Transplantacji Szpiku, Onkologii i Hematologii Dzieciecej

PORTUGAL

CENTRO
COIMBRA

Portuguese Severe Chronic Neutropenia Patient Registry - contributes to the SCN international registry (SCNIR)
Centro Hospitalar e Universitário de Coimbra, EPE - H. Pediátrico e H. Covőes
Serviço de Hematologia Clínica

REPUBLIK KOREA

KOREA, REPUBLIC OF
SEOUL

Förderung durch ein IRDiRC-MitgliedKorean Mutation Database for Rare Diseases
Seoul National University Hospital
Molecular Diagnostics Laboratory

SCHWEDEN

Region Skĺne
LUND

C2base: Mutation registry for C2 deficiency
Lunds Universitet
Department of Experimental Medical Science

SCHWEDEN

Region Skĺne
LUND

C5base: Mutation registry for C5 deficiency
Lunds Universitet
Department of Experimental Medical Science

SCHWEDEN

Region Skĺne
LUND

C6base: Mutation registry for C6 deficiency
Lunds Universitet
Department of Experimental Medical Science

SCHWEDEN

Region Skĺne
LUND

C7base: Mutation registry for C7 deficiency
Lunds Universitet
Department of Experimental Medical Science

SCHWEDEN

Region Skĺne
LUND

C8Bbase: Mutation registry for C8B deficiency
Lunds Universitet
Department of Experimental Medical Science

SCHWEDEN

Region Skĺne
LUND

C9base: Mutation registry for C9 deficiency
Lunds Universitet
Department of Experimental Medical Science

SCHWEDEN

Region Skĺne
LUND

CEBPEbase: Mutation registry for Neutrophil-specific granule deficiency
Lunds Universitet
Department of Experimental Medical Science

SCHWEDEN

Region Skĺne
LUND

CFHbase: Mutation registry for Factor H deficiency (previously known as HF1base)
Lunds Universitet
Department of Experimental Medical Science

SCHWEDEN

Region Skĺne
LUND

CFIbase: Mutation registry for Factor I deficiency (previously known as IFbase)
Lunds Universitet
Department of Experimental Medical Science

SCHWEDEN

Region Skĺne
LUND

CTSCbase: Mutation registry for Papillon-Lefevre syndrome
Lunds Universitet
Department of Experimental Medical Science

SCHWEDEN

Region Skĺne
LUND

SCHWEDEN

Region Skĺne
LUND

SCHWEDEN

Region Skĺne
LUND

ELA2base: Mutation registry for Cyclic and congenital neutropenia
Lunds Universitet
Department of Experimental Medical Science

SCHWEDEN

Region Skĺne
LUND

LYSTbase: Mutation registry for Chediak-Higashi syndrome (previously known as CHS1base)
Lunds Universitet
Department of Experimental Medical Science

SCHWEDEN

Region Skĺne
LUND

MPObase: Mutation registry for Myeloperoxidase deficiency
Lunds Universitet
Department of Experimental Medical Science

SCHWEDEN

Region Skĺne
LUND

SCHWEDEN

Region Skĺne
LUND

SCHWEDEN

Region Skĺne
LUND

RAC2base: Mutation registry for Neutrophil immunodeficiency syndrome
Lunds Universitet
Department of Experimental Medical Science

SCHWEDEN

Region Skĺne
LUND

SBDSbase: Mutation registry for Shwachman-Diamond syndrome
Lunds Universitet
Department of Experimental Medical Science

SCHWEDEN

Region Skĺne
LUND

C1QAbase: Mutation registry for C1QA polypeptide deficiency
Lunds Universitet
Department of Experimental Medical Science

SCHWEDEN

Region Skĺne
LUND

C1QBbase: Mutation registry for C1QB polypeptide deficiency
Lunds Universitet
Department of Experimental Medical Science

SCHWEDEN

Region Skĺne
LUND

C1QCbase: Mutation registry for C1QC polypeptide deficiency
Lunds Universitet
Department of Experimental Medical Science

SCHWEDEN

Region Skĺne
LUND

C1Sbase: Mutation registry for C1s deficiency
Lunds Universitet
Department of Experimental Medical Science

SCHWEDEN

Region Skĺne
LUND

CD59base: Mutation registry for CD59 deficiency
Lunds Universitet
Department of Experimental Medical Science

SCHWEDEN

Region Skĺne
LUND

CFDbase: Mutation registry for Factor D deficiency
Lunds Universitet
Department of Experimental Medical Science

SCHWEDEN

Region Stockholm
HUDDINGE

SERBIA

Serbia
BELGRADE

SPANIEN

Comunidad Valenciana
VALENCIA

CIBERER Biobank (Biobank of rare diseases)
IIS La Fe - Instituto de Investigación Sanitaria La Fe
Grupo de investigación en biomedicina molecular, celular y genómica

SPANIEN

Comunidad Valenciana
VALENCIA

CIBERER Biobank (Biobank of rare diseases)
INCLIVA - Facultad de Medicina de la Universidad de Valencia
Grupo de investigación en fisiopatología celular y orgánica del estrés oxidativo

SPANIEN

Madrid
MADRID

Spanish Severe Chronic Neutropenia Registry - contributes to the SCN international registry (SCNIR)
Hospital Universitario La Paz
Servicio de Hemato-Oncología pediátrica

SPANIEN

Madrid
MADRID

BioNER: Biobank of the Institute of Rare Diseases Research/Institute of Health Carlos III
ISCIII - Instituto de Salud Carlos III
Instituto de Investigación de Enfermedades Raras

TSCHECHISCHE REPUBLIK

Hradec Kralove
HRADEC KRÁLOVÉ

Czech severe chronic neutropenia registry - contributes to the SCN international registry (SCNIR)
Fakultní nemocnice Hradec Králové - CHU Hradec Králové
Oddeleni klinicke hematolgie - Department of clinical hematology

TURKEI

TURKEY
ANKARA

Turkish severe chronic neutropenia registry - contributes to the SCN international registry (SCNIR)
Ankara University - Faculty of medicine
Department of Pediatric Immunology-Allergy

VEREINIGTES KONIGREICH

Cambridgeshire
CAMBRIDGE

VEREINIGTES KONIGREICH

Greater London
LONDON

English severe chronic neutropenia registry - contributes to the SCN international registry (SCNIR)
University College London Hospitals, NHS Foundation Trust
Haematology and oncology department

VEREINIGTES KONIGREICH

West Yorkshire
LEEDS

DEUTSCHLAND

Nordrhein-Westfalen
MÜNSTER

PORTUGAL

NORTE
PORTO

MitoBreak: The mitochondrial DNA breakpoints database.
CIIMAR - Interdisciplinary Centre of Marine and Environmental Research

SCHWEDEN

Region Skĺne
LUND

AP3B1base: Mutation registry for Hermansky-Pudlak syndrome 2
Lunds Universitet
Department of Experimental Medical Science

SCHWEDEN

Region Skĺne
LUND

GFI1base: Mutation registry for SCN and NI-CINA
Lunds Universitet
Department of Experimental Medical Science

SCHWEDEN

Region Skĺne
LUND

ITGB2base: Mutation registry for Leukocyte adhesion deficiency I (LAD-I)
Lunds Universitet
Department of Experimental Medical Science

SCHWEDEN

Region Skĺne
LUND

RAB27Abase: Mutation registry for Griscelli syndrome, type 2 (GS2)
Lunds Universitet
Department of Experimental Medical Science

SCHWEDEN

Region Skĺne
LUND

SCHWEDEN

Region Skĺne
LUND

TAZbase: Mutation registry for Barth syndrome
Lunds Universitet
Department of Experimental Medical Science

SCHWEDEN

Region Skĺne
LUND

MAPBPIPbase: Mutation registry for Endosomal adaptor protein p14 deficiency
Lunds Universitet
Department of Experimental Medical Science

DEUTSCHLAND

Rheinland-Pfalz
MAINZ

Deutsches Kinderkrebsregister (Eingebunden in das ACCIS-Projekt: Automated Childhood Cancer Information System, Mitglied von IACR und ENCR)
Institut für Medizinische Biometrie, Epidemiologie und Informatik (IMBEI)
Deutsches Kinderkrebsregister am IMBEI

SCHWEDEN

Region Skĺne
LUND

HAX1base: Mutation registry for Severe congenital neutropenia (Kostmann disease)
Lunds Universitet
Department of Experimental Medical Science

Netzwerke für Register und Biobanken

DEUTSCHLAND

Baden-Württemberg
FREIBURG

ESID: Europäisches Patientenregister für primäre Immundefekte
  • CCI am Universitätsklinikum Freiburg
  • ESID-Registry
  • ITALIEN

    LIGURIA
    GENOVA

    Förderung durch ein IRDiRC-MitgliedEUROFEVER: PReS European network of registries for autoinflammatory diseases in childhood
  • IRCCS Istituto G. Gaslini - Ospedale Pediatrico
  • U.O.C. di Pediatria II - I.A.S. Malattie Autoinfiammatorie
  • DEUTSCHLAND

    Niedersachsen
    HANNOVER

    Förderung durch ein IRDiRC-MitgliedSCNIR: Severe Chronic Neutropenia International Registry
  • Medizinische Hochschule Hannover
  • SCNIR - Europazentrale