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Registri and biobanche
AUSTRIA
OBERÖSTERREICH
LINZ
Non-Interventional, web-based Registry for Histiocytic Disorders
Ordensklinikum Linz GmbH Elisabethinen
Interne 1 - Hämatologie mit Stammzelltransplantation, Hämostaseologie und medizinische Onkologie
BELGIO
ARRONDISSEMENT BRUSSELS-CAPITAL
BRUSSELS
Central Registry of Rare Diseases (CRRD)
Sciensano
Health Services Research - Rare Diseases
FRANCIA
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)
FRANCIA
ILE-DE-FRANCE
PARIS
EurêClark registry (The European Clarkson's syndrome registry)
APHP.Sorbonne Université, Hôpital de la Pitié-Salpêtrière
Service de Médecine Interne, Maladies Auto-Immunes et Systémiques
FRANCIA
ILE-DE-FRANCE
PARIS
Biological collection in sarcoidosis in France
CHU Paris-GH St-Louis Lariboisière F.Widal - Hôpital Saint-Louis
Service de pneumologie
FRANCIA
ILE-DE-FRANCE
PARIS
French atypical sarcoïdosis clinical forms registry
CHU Paris-GH St-Louis Lariboisière F.Widal - Hôpital Saint-Louis
Service de pneumologie
GERMANIA
Baden-Württemberg
FREIBURG
German registry for papulosis atrophicans maligna
Venenzentrum Freiburg
GERMANIA
Berlin
BERLIN
Core documentation of children and adolescens with rheumatic diseases
Deutsches Rheuma-Forschungszentrum Berlin
Forschungsbereich Epidemiologie
GERMANIA
Hessen
GIEßEN
Giessen PNEUMObank
Med. Klinik und Poliklinik II des UKGM am Standort Gießen
Schwerpunkt Pneumologie und Intensivmedizin - Fibrosierende Lungenerkrankungen
GERMANIA
Mecklenburg-Vorpommern
ROSTOCK
National patient registry rare histiocytic disorders - part of the International Rare Histiocytic Disorders Registry (IRHDR)
Universitäts-Kinder- und Jugendklinik Rostock
Kinder- und Jugendklinik
GERMANIA
Nordrhein-Westfalen
WÜRSELEN
German calciphylaxis registry -contributes to the international calciphylaxis registry EuCalNet
Rhein-Maas-Klinikum
Klinik für Kardiologie, Nephrologie und Internistische Intensivmedizin
GERMANIA
Sachsen-Anhalt
DESSAU
German registry for papulosis atrophicans maligna
Städtisches Klinikum Dessau
Klinik für Dermatologie, Venerologie und Allergologie / Immunologisches Zentrum
GERMANIA
Schleswig-Holstein
KIEL
POPGEN biobank
Christian-Albrechts-Universität zu Kiel -UKSH
Institut für Epidemiologie
GERMANIA
Schleswig-Holstein
KIEL
German amyloid registry kiel
Universitätsklinikum Schleswig-Holstein - Campus Kiel
Institut für Pathologie des UKSH und der CAU zu Kiel
ITALIA
LIGURIA
GENOVA
ERN [RITA] - MERITA: UN REGISTRO DI METADATI PER ERN RITA
IRCCS Istituto G. Gaslini - Ospedale Pediatrico
U.O. Pediatria II
ITALIA
TOSCANA
PISA
ERN [ReCONNET] - TogethERN ReCONNET: un Registro Europeo per l'armonizzazione dei dati sulle malattie rare del tessuto connettivo e dell'apparato muscolo-scheletrico
Azienda Ospedaliero Universitaria Pisana - Ospedale S. Chiara
ERN ReCONNET coordinating center
REGNO UNITO; GRAN BRETAGNA
Lothian
EDINBURGH
Hereditary Hemorrhagic Telangiectasia (HHT) Mutation Database: ACVRL1 and ENG
Western General Hospital
Molecular Genetics Laboratory (part of the South East Scotland Genetics Service)
SPAGNA
Andalucía
SEVILLA
Registry for rare diseases in Andalusia (Spain)
Junta de Andalucía. Consejería de Salud y Bienestar Social
Dirección General de Calidad, Investigación y Gestión del Conocimiento
SPAGNA
Aragón
ZARAGOZA
Rare disease registry of Aragon (Spain)
Gobierno de Aragón. Departamento de Sanidad, Bienestar Social y Familia
Servicio de Evaluación y Acreditación Sanitaria
SPAGNA
Baleares
PALMA DE MALLORCA
Population registry of rare diseases of Balearic Islands (Spain)
Govern de les Illes Balears. Dirección General de Salud Pública y Consumo
Servicio de Epidemiología
SPAGNA
Baleares
PALMA DE MALLORCA
Population registry of rare diseases of Balearic Islands (Spain)
Govern de les Illes Balears. Dirección General de Salud Pública y Consumo
Dirección General de Salud Pública y Consumo
SPAGNA
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
SPAGNA
Comunidad Valenciana
VALENCIA
SIER-CV: Information System on rare diseases in Valencian Community (Spain)
FISABIO - Salud Pública
Área de Enfermedades Raras
SPAGNA
Extremadura
MÉRIDA
Registry for rare diseases in Extremadura (Spain)
Junta de Extremadura. Servicio Extremeño de Salud
Subdirector de Epidemiología
SPAGNA
Galicia
SANTIAGO DE COMPOSTELA
RERGA: Registry for rare diseases in Galicia (Spain)
Servicio Gallego de Salud
Servicio de Análisis y Evaluación Asistencial
SPAGNA
Madrid
MADRID
SIERMA: Information system on rare diseases in Madrid (Spain)
Comunidad de Madrid. Subdirección de Promoción y Prevención de la Salud
Subdirección de Promoción y Prevención de la Salud
SPAGNA
Madrid
MADRID
ReeR: Spanish National Registry of Rare Diseases
ISCIII - Instituto de Salud Carlos III
Instituto de Investigación de Enfermedades Raras
SPAGNA
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
SPAGNA
Navarra
PAMPLONA
Population registry of rare diseases of Navarra (Spain)
Instituto de Salud Pública y Laboral de Navarra
Sección de Epidemiología de Enfermedades No Transmisibles
SVIZZERA
Suisse Alémanique
BERN
Swiss Rare Disease Registry
Institute of Social and Preventive Medicine (ISPM)
SVIZZERA
Suisse Alémanique
ZÜRICH
Swiss Rare Disease Registry
Universitäts - Kinderspital Zürich - Eleonorenstiftung
Abteilung für Stoffwechselkrankheiten
SVIZZERA
Suisse Romande
LAUSANNE
Swiss registries for Interstitial and Orphan Lung Diseases (SIOLD Registries)
Centre Hospitalier Universitaire Vaudois CHUV
Swiss registries for Interstitial and Orphan Lung Diseases
BELGIO
ARRONDISSEMENT BRUSSELS-CAPITAL
BRUSSELS
Belgian systemic sclerosis cohort
Cliniques universitaires Saint-Luc - UCLouvain
Service de rhumatologie
CANADA
Québec
MONTRÉAL
Canadian Inflammatory Myopathy Study (CIMS)
Hôpital général juif - Jewish General Hospital
Rheumatology Department, Suite A 725
CANADA
Québec
MONTRÉAL
Canadian Inflammatory Myopathy Study (CIMS)
Montreal Neurological Institute and Hospital
Clinical Research Unit (CRU)
FRANCIA
ILE-DE-FRANCE
PARIS
French auto-immunity and Rituximab (AIR) registry: prospective study of patients treated with Rituximab
CHU Paris Centre - Hôpital Cochin, Site Cochin
Unité fonctionnelle de Médecine interne et centre de référence maladies rares
FRANCIA
ILE-DE-FRANCE
PARIS
RaDiCo-MARFAN: National cohort on Marfan syndrome and apparent diseases
CHU Paris Nord-Val de Seine - Hôpital Xavier Bichat-Claude Bernard
Service de cardiologie
FRANCIA
ILE-DE-FRANCE
PARIS
Registry for Patients with Digital Ulcers Associated with Systemic Sclerosis (DU/SSc)
CHU Paris-GH St-Louis Lariboisière F.Widal - Hôpital Saint-Louis
MATHEC - Maladies Auto-Immunes et Thérapie Cellulaire
FRANCIA
ILE-DE-FRANCE
PARIS
European Society for Blood and Marrow Transplant Society Registry (EBMT registry)
CHU Paris-GH St-Louis Lariboisière F.Widal - Hôpital Saint-Louis
MATHEC - Maladies Auto-Immunes et Thérapie Cellulaire
FRANCIA
ILE-DE-FRANCE
PARIS
European prospective registry of children born to mothers affected by the antiphospholipids syndrome
Cabinet Médical Jarente
Service de Pédiatrie - Consultation de Génétique médicale et clinique
FRANCIA
ILE-DE-FRANCE
PARIS
French Cohorts in Sneddon syndrome and suspected Sneddon syndrome livedo
Groupe hospitalier AP-HP.6 - Hôpital Tenon
Service de dermatologie, médecine vasculaire et allergologie
FRANCIA
ILE-DE-FRANCE
PARIS
FRANCIA
OCCITANIE
MONTPELLIER
UMD TGFBR2 (transforming growth factor, beta receptor II) mutations database
IURC - Institut Universitaire de Recherche Clinique
Laboratoire de génétique moléculaire
FRANCIA
OCCITANIE
MONTPELLIER
UMD FBN1 (fibrillin 1) mutations database
IURC - Institut Universitaire de Recherche Clinique
Laboratoire de génétique moléculaire
FRANCIA
OCCITANIE
MONTPELLIER
UMD FBN2 (fibrillin 2) mutations database
IURC - Institut Universitaire de Recherche Clinique
Laboratoire de génétique moléculaire
FRANCIA
PROVENCE-ALPES-COTE D'AZUR
MARSEILLE
French case registry for IgG4-related disease
CHU de Marseille - Hôpital de la Timone
Département de Médecine Interne
GERMANIA
Baden-Württemberg
FREIBURG
GAIN: Patient Registry of the German Network for the Research and Therapy Optimization of Patients with Multi-Organ Autoimmune Diseases
CCI am Universitätsklinikum Freiburg
Centrum für Chronische Immundefizienz
GERMANIA
Baden-Württemberg
FREIBURG
GAIN-Biobank: Consortial Biobank for patients with Inborn Errors of Multi-Organ Autoimmune Diseases
CCI am Universitätsklinikum Freiburg
Centrum für Chronische Immundefizienz
GERMANIA
Baden-Württemberg
FREIBURG
GAIN: Patient Registry of the German Network for the Research and Therapy Optimization of Patients with Multi-Organ Autoimmune Diseases
Universitätsklinikum Freiburg
ESID Online Datenbank
GERMANIA
Bayern
MÜNCHEN
MD-NET: Muscle Tissue Culture Collection (MTCC) (EuroBioBank partner)
Friedrich-Baur-Institut
Friedrich-Baur-Institut an der Neurologischen Klinik und Poliklinik
GERMANIA
Niedersachsen
HANNOVER
GAIN-Biobank: Consortial Biobank for patients with Inborn Errors of Multi-Organ Autoimmune Diseases
CRC Hannover
Hannover Unified Biobank (HUB)
GERMANIA
Niedersachsen
HANNOVER
Lupus nephritis registry (established by the german paediatric nephrology association)
Medizinische Hochschule Hannover
Klinik für Pädiatrische Nieren-, Leber- und Stoffwechselerkrankungen
GERMANIA
Nordrhein-Westfalen
KÖLN
Patient registry of the German Network for Systemic Scleroderma
Universitätsklinikum Köln
Koordinierungszentrale des DNSS
PAESI BASSI
Groningen
GRONINGEN
Biobank Sjögren Syndrome (DNA/whole blood/serum/tissue/saliva/tears) - Part of RESULT: REgistry of Sjögren syndrome in UMCG: a LongiTudinal study
UMCG - Universitair Medisch Centrum Groningen
Afdeling Mondziekten, Kaak- en Aangezichtschirurgie
PAESI BASSI
Groningen
GRONINGEN
Biobank Sjögren Syndrome (DNA/whole blood/serum/tissue/saliva/tears) - Part of RESULT: REgistry of Sjögren syndrome in UMCG: a LongiTudinal study
UMCG - Universitair Medisch Centrum Groningen
Afdeling Reumatologie & Klinische Immunologie
PAESI BASSI
Noord-Holland
AMSTERDAM
Biobank Inflammatory Neuromuscular Diseases (serum/peripheral bood cells/RNA/tissue/CSF)
Amsterdam UMC, locatie AMC
Afdeling Neurologie
PAESI BASSI
Utrecht
NIEUWEGEIN
Biobank of Interstitial Lung Diseases (DNA/serum/plasma/BAL fluid)
St. Antonius Ziekenhuis, locatie Nieuwegein
Longcentrum
REGNO UNITO; GRAN BRETAGNA
Greater Manchester
SALFORD
EuroMyositis registry
Hope Hospital, University of Manchester
The University of Manchester Rheumatic Diseases Centre
SPAGNA
Canarias
LAS PALMAS
Spanish Rheumatology Society Lupus Registry
Hospital Universitario de Gran Canaria Dr. Negrín
Servicio de Reumatología
SPAGNA
Cataluña
BARCELONA
REeRIGG4: Spanish IgG4-related Disease Registry
Hospital Universitari Vall d'Hebron
Servicio de Medicina Interna
SPAGNA
Madrid
MADRID
MYO-SPAIN Platform: Patient registry on idiopathic inflammatory myopathy in Spain
Sociedad Española de Reumatología
SVIZZERA
Suisse Alémanique
BASEL
Swiss SLE Cohort Study
Universitätsspital Basel
Association of the Swiss SLE Cohort Study (ASSCS)
SVIZZERA
Suisse Alémanique
BASEL
SACHER: Swiss Adult Congenital HEart disease Registry
Universitätsspital Basel
Cardiology Department
UNGHERIA
Dél-Dunántúl
PECS
Marfan biobank
Clinical Center - University of Pécs
Department of Medical Genetics
FRANCIA
ILE-DE-FRANCE
PARIS
GERMANIA
Bayern
MÜNCHEN
German IBM registry: Patient registry for aquired or sporadic inclusion body myositis
Friedrich-Baur-Institut
TREAT-NMD-Patientenregister
GERMANIA
Nordrhein-Westfalen
WUPPERTAL
National registry for retroperitoneal fibrosis
HELIOS Universitätsklinikum Wuppertal - Universität Witten/Herdecke
Klinik für Urologie und Kinderurologie, Prostatazentrum Wuppertal und Bergisch Land
ITALIA
LIGURIA
GENOVA
Galliera Genetic Bank
Ospedali Galliera
Dipartimento di Scienze genetiche, Perinatali e Ginecologiche
ITALIA
SICILIA
MESSINA
Registro Nazionale per l'Amiloidosi Familiare da Transtiretina (TTR-FAP)
A.O.U. Policlinico "G. Martino"
Centro Clinico Nemo Sud - Centro ad alta specializzazione per le malattie neuromuscolari
PAESI BASSI
Gelderland
NIJMEGEN
ERN [eUROGEN] - ERN eUROGEN Registry for rare urogenital diseases
Radboudumc - Radboud universitair medisch centrum
Afdeling Kinderurologie
PAESI BASSI
Gelderland
NIJMEGEN
ERN [eUROGEN] - ERN eUROGEN Registry for rare urogenital diseases
Radboudumc - Radboud universitair medisch centrum
Afdeling Health Evidence
PORTOGALLO
NORTE
PORTO
MitoBreak: The mitochondrial DNA breakpoints database.
CIIMAR - Interdisciplinary Centre of Marine and Environmental Research
REGNO UNITO; GRAN BRETAGNA
Greater London
LONDON
UK and Ireland Juvenile Dermatomyositis Cohort Biomarker Study and Repository
GOSH NHS Foundatin Trust
Juvenile Dermatomyositis Research Centre
REGNO UNITO; GRAN BRETAGNA
Greater London
LONDON
UK and Ireland Juvenile Dermatomyositis Cohort Biomarker Study and Repository
GOSH NHS Foundatin Trust
Rheumatology Unit
REGNO UNITO; GRAN BRETAGNA
Greater London
LONDON
UK and Ireland Juvenile Dermatomyositis Cohort Biomarker Study and Repository
The Institute of Child Health & The Division of Medicine, UCL
Arthritis Research UK Centre for Adolescent Rheumatology
REGNO UNITO; GRAN BRETAGNA
Merseyside
LIVERPOOL
UK and Ireland Juvenile Dermatomyositis Cohort Biomarker Study and Repository
Alder Hey Children's Hospital
Department of Rheumatology
SPAGNA
Cataluña
BARCELONA
NMD-ES: Inclusion Body Myositis Registry
Hospital de la Santa Creu i Sant Pau
Servicio de Neurología
SVEZIA
Region Västerbotten
UMEÅ
Swedish Registry for Familial Amyloid Polyneuropathy
University Hospital of Umeå
Department of Medicine
Network di registri and biobanche
GERMANIA
Nordrhein-Westfalen
WÜRSELEN
EuCalNet: International Calciphylaxis Registry
Rhein-Maas-Klinikum
Klinik für Kardiologie, Nephrologie und Internistische Intensivmedizin
SPAGNA
Madrid
MADRID