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46 Resultado(s)

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Financiado por um membro do IRDiRC =

Registos e biobancos

ALEMANHA

Schleswig-Holstein
LÜBECK

GeVas: German Vasculitis Registry
Universitätsklinikum Schleswig-Holstein - Campus Lübeck
Klinik für Rheumatologie und Klinische Immunologie

BELGICA

ARRONDISSEMENT BRUSSELS-CAPITAL
BRUSSELS

Central Registry of Rare Diseases (CRRD)
Sciensano
Health Services Research - Rare Diseases

ESPANHA

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

ESPANHA

Aragón
ZARAGOZA

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

ESPANHA

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

ESPANHA

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

ESPANHA

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

ESPANHA

Comunidad Valenciana
VALENCIA

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

ESPANHA

Extremadura
MÉRIDA

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

ESPANHA

Galicia
SANTIAGO DE COMPOSTELA

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

ESPANHA

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

ESPANHA

Madrid
MADRID

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

ESPANHA

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

ESPANHA

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

FRANCA

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)

FRANCA

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

IRLANDA

County Dublin
DUBLIN

The Irish Rare Kidney Disease Registry and Biobank
St James's Hospital
Trinity Health Kidney Centre - Trinity College Dublin

PAISES BAIXOS

Noord-Holland
AMSTERDAM

REINO UNIDO

Greater London
LONDON

UK and Ireland Vasculitis registry (UKIVAS)
Royal Free London Hospital
University College London, Centre for Nephrology

REINO UNIDO

Oxfordshire
OXFORD

UK and Ireland Vasculitis registry (UKIVAS)
Nuffield Orthopaedic Centre
Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences

ALEMANHA

Nordrhein-Westfalen
AACHEN

German calciphylaxis registry -contributes to the international calciphylaxis registry EuCalNet
Universitätsklinikum Aachen
Klinik für Kardiologie, Pneumologie, Angiologie und Internistische Intensivmedizin (Med. Klinik I)

FRANCA

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

ALEMANHA

Hamburg
HAMBURG

ALEMANHA

Sachsen-Anhalt
DESSAU

German registry for Morbus Adamantiades-Behçet e.V.
Städtisches Klinikum Dessau
Deutsches Register Morbus Adamantiades-Behçet e.V.

AUSTRIA

TIROL
INNSBRUCK

Innsbruck registry for Adamantiades-Behcet disease: Retrospective and prospective data collection
Medizinische Universität Innsbruck
Universitätsklinik für Innere Medizin II

CANADA

Colombie-Britannique
VANCOUVER

Glomerulonephritis Registry
Centre for Health Evaluation and Outcome Sciences (CHEOS)
Department of Nephrology

FRANCA

ILE-DE-FRANCE
LE KREMLIN-BICÊTRE

Establishment of children and adolescents cohort in Behcet disease in France
CHU Paris-Sud - Hôpital de Bicêtre
Service de Rhumatologie pédiatrique

FRANCA

ILE-DE-FRANCE
LE KREMLIN-BICÊTRE

DNA bank for child's Behcet disease in France
CHU Paris-Sud - Hôpital de Bicêtre
Service de Rhumatologie pédiatrique

FRANCA

ILE-DE-FRANCE
LE KREMLIN-BICÊTRE

KAWA-NET: KAWASAKI disease registry
CHU Paris-Sud - Hôpital de Bicêtre
Service de Rhumatologie pédiatrique

ITALIA

SICILIA
MESSINA

Behçet's disease registry
A.O.U. Policlinico "G. Martino"
Ambulatorio di Immunologia e Reumatologia Pediatrica

SUICA

Suisse Alémanique
BERN

Swiss Paediatric Renal Registry
Institute of Social and Preventive Medicine (ISPM)

SUICA

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

TURQUIA

TURKEY
ISTANBUL

Database setup for the visualisation and examination of oral ulcers in Behcet disease patients
Istanbul University Faculty of medicine
Department of internal medicine

ALEMANHA

Baden-Württemberg
FREIBURG

PSHN Registry - Purpura Schoenlein-Henoch-Nephritis registry of the German society for paediatric nephrology (GPN)
Zentrum für Kinder- und Jugendmedizin Freiburg
Sektion Kindernephrologie der Klinik für Allgemeine Kinder- und Jugendmedizin

ALEMANHA

Bayern
MÜNCHEN

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

FRANCA

ILE-DE-FRANCE
PARIS

Financiado por um membro do IRDiRCRaDiCo-SED-VASC: National cohort on vascular Ehlers-Danlos syndrome
CHU Paris IdF Ouest - HEGP Hôpital Européen Georges Pompidou
Service de génétique - CR des Maladies Vasculaires Rares

FRANCA

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

FRANCA

ILE-DE-FRANCE
PARIS

BLAU registry: French pediatric granulomatous arthritis registry
Hôpital Necker-Enfants Malades
Service d'Immuno-hématologie pédiatrique - Rhumatologie

FRANCA

OCCITANIE
MONTPELLIER

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

FRANCA

OCCITANIE
MONTPELLIER

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

HUNGRIA

Dél-Dunántúl
PECS

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

SUICA

Suisse Alémanique
BASEL

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

Redes de registos e biobancos

ESPANHA

Madrid
MADRID

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

    County Dublin
    DUBLIN

    UKIVAS - UK and Ireland registry of autoimmune vasculitides
  • St James's Hospital
  • Trinity Health Kidney Centre - Trinity College Dublin
  • ALEMANHA

    Nordrhein-Westfalen
    AACHEN

    EuCalNet: International Calciphylaxis Registry
  • Universitätsklinikum Aachen
  • Klinik für Kardiologie, Pneumologie, Angiologie und Internistische Intensivmedizin (Med. Klinik I)
  • ITALIA

    LIGURIA
    GENOVA

    EUROFEVER: PReS European network of registries for autoinflammatoy diseases in childhood
  • IRCCS Istituto G. Gaslini - Ospedale Pediatrico
  • U.O.C. di Pediatria II - I.A.S. Malattie Autoinfiammatorie