Orphanet: Search simple
x

Search for a registry/biobank

* (*) mandatory field

80 Result(s)

Sort by

Funded by an IRDiRC member = Member of a ERN =

Registries and Biobanks

AUSTRIA

OBERÖSTERREICH
LINZ

Register für histiozytäre Erkrankungen
Ordensklinikum Linz GmbH Elisabethinen
Interne 1 - Hämatologie mit Stammzelltransplantation, Hämostaseologie und medizinische Onkologie

BELGIUM

ARRONDISSEMENT BRUSSELS-CAPITAL
BRUSSELS

Registre Central des Maladies Rares / Centraal Register Zeldzame Ziekten
Sciensano
Health Services Research - Rare Diseases

FRANCE

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)

FRANCE

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

FRANCE

ILE-DE-FRANCE
PARIS

Biological collection in sarcoidosis in France
CHU Paris-GH St-Louis Lariboisière F.Widal - Hôpital Saint-Louis
Service de pneumologie

FRANCE

ILE-DE-FRANCE
PARIS

French atypical sarcoïdosis clinical forms registry
CHU Paris-GH St-Louis Lariboisière F.Widal - Hôpital Saint-Louis
Service de pneumologie

GERMANY

Baden-Württemberg
FREIBURG

GERMANY

Berlin
BERLIN

Core documentation of children and adolescens with rheumatic diseases
Deutsches Rheuma-Forschungszentrum Berlin
Forschungsbereich Epidemiologie

GERMANY

Hessen
GIEßEN

Giessen PNEUMObank
Med. Klinik und Poliklinik II des UKGM am Standort Gießen
Schwerpunkt Pneumologie und Intensivmedizin - Fibrosierende Lungenerkrankungen

GERMANY

Mecklenburg-Vorpommern
ROSTOCK

GERMANY

Nordrhein-Westfalen
WÜRSELEN

German calciphylaxis registry -contributes to the international calciphylaxis registry EuCalNet
Rhein-Maas-Klinikum
Klinik für Kardiologie, Nephrologie und Internistische Intensivmedizin

GERMANY

Sachsen-Anhalt
DESSAU

German registry for papulosis atrophicans maligna
Städtisches Klinikum Dessau
Klinik für Dermatologie, Venerologie und Allergologie / Immunologisches Zentrum

GERMANY

Schleswig-Holstein
KIEL

Funded by an IRDiRC memberPOPGEN biobank
Christian-Albrechts-Universität zu Kiel -UKSH
Institut für Epidemiologie

GERMANY

Schleswig-Holstein
KIEL

German amyloid registry kiel
Universitätsklinikum Schleswig-Holstein - Campus Kiel
Institut für Pathologie des UKSH und der CAU zu Kiel

ITALY

LIGURIA
GENOVA

Funded by an IRDiRC memberERN [RITA] - MERITA: A METADATA REGISTRY FOR THE ERN RITA
IRCCS Istituto G. Gaslini - Ospedale Pediatrico
U.O. Pediatria II

SPAIN

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

SPAIN

Aragón
ZARAGOZA

Rare disease registry of Aragon (Spain)
Gobierno de Aragón. Departamento de Sanidad, Bienestar Social y Familia
Servicio de Evaluación y Acreditación Sanitaria

SPAIN

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

SPAIN

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

SPAIN

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

SPAIN

Comunidad Valenciana
VALENCIA

SIER-CV: Information System on rare diseases in Valencian Community (Spain)
FISABIO - Salud Pública
Área de Enfermedades Raras

SPAIN

Extremadura
MÉRIDA

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

SPAIN

Galicia
SANTIAGO DE COMPOSTELA

RERGA: Registry for rare diseases in Galicia (Spain)
Servicio Gallego de Salud
Servicio de Análisis y Evaluación Asistencial

SPAIN

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

SPAIN

Madrid
MADRID

ReeR: Spanish National Registry of Rare Diseases
ISCIII - Instituto de Salud Carlos III
Instituto de Investigación de Enfermedades Raras

SPAIN

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

SPAIN

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

SWITZERLAND

Suisse Alémanique
BERN

Swiss Rare Disease Registry
Institute of Social and Preventive Medicine (ISPM)

SWITZERLAND

Suisse Alémanique
ZÜRICH

Swiss Rare Disease Registry
Universitäts - Kinderspital Zürich - Eleonorenstiftung
Abteilung für Stoffwechselkrankheiten

SWITZERLAND

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

UNITED KINGDOM

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)

BELGIUM

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)

FRANCE

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

FRANCE

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

FRANCE

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

FRANCE

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

FRANCE

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

FRANCE

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

FRANCE

OCCITANIE
MONTPELLIER

UMD TGFBR2 (transforming growth factor, beta receptor II) mutations database
IURC - Institut Universitaire de Recherche Clinique
Laboratoire de génétique moléculaire

FRANCE

OCCITANIE
MONTPELLIER

UMD FBN1 (fibrillin 1) mutations database
IURC - Institut Universitaire de Recherche Clinique
Laboratoire de génétique moléculaire

FRANCE

OCCITANIE
MONTPELLIER

UMD FBN2 (fibrillin 2) mutations database
IURC - Institut Universitaire de Recherche Clinique
Laboratoire de génétique moléculaire

FRANCE

PROVENCE-ALPES-COTE D'AZUR
MARSEILLE

French case registry for IgG4-related disease
CHU de Marseille - Hôpital de la Timone
Département de Médecine Interne

GERMANY

Baden-Württemberg
FREIBURG

GERMANY

Baden-Württemberg
FREIBURG

Funded by an IRDiRC memberGAIN-Biobank: Consortial Biobank for patients with Inborn Errors of Multi-Organ Autoimmune Diseases
CCI am Universitätsklinikum Freiburg
Centrum für Chronische Immundefizienz

GERMANY

Bayern
MÜNCHEN

MD-NET: Muscle Tissue Culture Collection (MTCC) (EuroBioBank partner)
Friedrich-Baur-Institut
Friedrich-Baur-Institut an der Neurologischen Klinik und Poliklinik

GERMANY

Niedersachsen
HANNOVER

GERMANY

Niedersachsen
HANNOVER

Lupus nephritis registry (established by the german paediatric nephrology association)
Medizinische Hochschule Hannover
Klinik für Pädiatrische Nieren-, Leber- und Stoffwechselerkrankungen

GERMANY

Nordrhein-Westfalen
KÖLN

Patient registry of the German Network for Systemic Scleroderma
Universitätsklinikum Köln
Koordinierungszentrale des DNSS

HUNGARY

Dél-Dunántúl
PECS

Marfan biobank
Clinical Center - University of Pécs
Department of Medical Genetics

NETHERLANDS

Groningen
GRONINGEN

Funded by an IRDiRC memberBiobank 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

NETHERLANDS

Groningen
GRONINGEN

NETHERLANDS

Noord-Holland
AMSTERDAM

NETHERLANDS

Utrecht
NIEUWEGEIN

Funded by an IRDiRC memberBiobank of Interstitial Lung Diseases (DNA/serum/plasma/BAL fluid)
St. Antonius Ziekenhuis, locatie Nieuwegein
Longcentrum

SPAIN

Canarias
LAS PALMAS

Spanish Rheumatology Society Lupus Registry
Hospital Universitario de Gran Canaria Dr. Negrín
Servicio de Reumatología

SPAIN

Cataluña
BARCELONA

REeRIGG4: Spanish IgG4-related Disease Registry
Hospital Universitari Vall d'Hebron
Servicio de Medicina Interna

SWITZERLAND

Suisse Alémanique
BASEL

Swiss SLE Cohort Study
Universitätsspital Basel
Association of the Swiss SLE Cohort Study (ASSCS)

SWITZERLAND

Suisse Alémanique
BASEL

SACHER: Swiss Adult Congenital HEart disease Registry
Universitätsspital Basel
Cardiology Department

UNITED KINGDOM

Greater Manchester
SALFORD

EuroMyositis registry
Hope Hospital, University of Manchester
The University of Manchester Rheumatic Diseases Centre

GERMANY

Bayern
MÜNCHEN

GERMANY

Nordrhein-Westfalen
WUPPERTAL

National registry for retroperitoneal fibrosis
HELIOS Universitätsklinikum Wuppertal - Universität Witten/Herdecke
Klinik für Urologie und Kinderurologie, Prostatazentrum Wuppertal und Bergisch Land

ITALY

LIGURIA
GENOVA

Galliera Genetic Bank
Ospedali Galliera
Dipartimento di Scienze genetiche, Perinatali e Ginecologiche

ITALY

SICILIA
MESSINA

Funded by an IRDiRC memberTransthyretin amyloid neuropathy (TTR-FAP) italian registry
A.O.U. Policlinico "G. Martino"
Centro Clinico Nemo Sud - Centro ad alta specializzazione per le malattie neuromuscolari

NETHERLANDS

Gelderland
NIJMEGEN

Funded by an IRDiRC memberERN [eUROGEN] - ERN eUROGEN Registry for rare urogenital diseases
Radboudumc - Radboud universitair medisch centrum
Afdeling Kinderurologie

NETHERLANDS

Gelderland
NIJMEGEN

Funded by an IRDiRC memberERN [eUROGEN] - ERN eUROGEN Registry for rare urogenital diseases
Radboudumc - Radboud universitair medisch centrum
Afdeling Health Evidence

PORTUGAL

NORTE
PORTO

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

SPAIN

Cataluña
BARCELONA

NMD-ES: Inclusion Body Myositis Registry
Hospital de la Santa Creu i Sant Pau
Servicio de Neurología

SWEDEN

Region Västerbotten
UMEÅ

Svenska FAP-registret
University Hospital of Umeå
Department of Medicine

UNITED KINGDOM

Greater London
LONDON

UK and Ireland Juvenile Dermatomyositis Cohort Biomarker Study and Repository
GOSH NHS Foundatin Trust
Juvenile Dermatomyositis Research Centre

UNITED KINGDOM

Greater London
LONDON

UNITED KINGDOM

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

UNITED KINGDOM

Merseyside
LIVERPOOL

UK and Ireland Juvenile Dermatomyositis Cohort Biomarker Study and Repository
Alder Hey Children's Hospital
Department of Rheumatology

Networks of registries and biobanks

GERMANY

Nordrhein-Westfalen
WÜRSELEN

EuCalNet: International Calciphylaxis Registry
  • Rhein-Maas-Klinikum
  • Klinik für Kardiologie, Nephrologie und Internistische Intensivmedizin
  • SPAIN

    Madrid
    MADRID

    SpainRDR: Spanish Rare Disease Registries Research Network (patient registries)
  • ISCIII - Instituto de Salud Carlos III
  • Instituto de Investigación de Enfermedades Raras