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Registri and biobanche

AUSTRALIA

Victoria
MEKBOURNE

Haemoglobinopathy Registry
Monash University
Department of Epidemiology & Preventive Medicine

AUSTRALIA

Victoria
MEKBOURNE

Aplastic Anaemia Registry (AAR)
Monash University
Department of Epidemiology & Preventive Medicine

AUSTRIA

WIEN
WIEN

Austrian Bone Marrow Donor Registry
Österreichische Knochenmarkspendezentrale
Fonds Österreichisches Stammzellregister

BELGIO

ARRONDISSEMENT BRUSSELS-CAPITAL
BRUSSELS

Haemoglobinopathies - database
Erasme Hospital - ULB
Centre de génétique humaine - ULB

BELGIO

ARRONDISSEMENT BRUSSELS-CAPITAL
BRUSSELS

Haemoglobinopathies - database
Hôpital Universitaire des Enfants Reine Fabiola - HUDERF
Service d'hémato-oncologie, d'immunologie et de rhumatologie pédiatrique

FRANCIA

GRAND-EST
VANDOEUVRE-LÈS-NANCY

National registry of children solid tumors
Faculté de médecine de Nancy
Registre national des tumeurs solides de l'enfant

FRANCIA

ILE-DE-FRANCE
PARIS

Finanziato da un ente associato a IRDiRCRaDiCo-MPS: National cohort on Mucopolysaccharidosis in the era of specific therapeutics
CHU Paris Est - Hôpital d'Enfants Armand-Trousseau
Service de Neuropédiatrie - Unité de neuropédiatrie et pathologie du développement

GERMANIA

Baden-Württemberg
FREIBURG

Hilda biobank for children at the University Medical Center Freiburg - diagnostic and research on biomaterials of children and adolescents
Zentrum für Kinder- und Jugendmedizin Freiburg
Klinik für Pädiatrische Hämatologie und Onkologie

GERMANIA

Baden-Württemberg
FREIBURG

Registry of the European Working Group (EWOG) for Severe Aplastic Anemia (SAA) in children and adolescents
Zentrum für Kinder- und Jugendmedizin Freiburg
Klinik für Pädiatrische Hämatologie und Onkologie

GERMANIA

Baden-Württemberg
TÜBINGEN

Neutropenia biobank - contributes to the SCN international registry (SCNIR)
Universitätsklinik für Kinder- und Jugendmedizin Tübingen
Abteilung für allgemeine Pädiatrie, Hämatologie/Onkologie

GERMANIA

Baden-Württemberg
ULM

OSTEOPETR: International registry of patients suffering from osteopetrosis
Klinik für Kinder- und Jugendmedizin des Universitätsklinikums Ulm
Sektion Knochenmark- und Stammzelltransplantation

GERMANIA

Niedersachsen
HANNOVER

GERMANIA

Nordrhein-Westfalen
KÖLN

Tumor bank for embryonal tumors
Universitätsklinikum Köln
Pädiatrische Onkologie und Hämatologie

GERMANIA

Rheinland-Pfalz
MAINZ

German mucopolysaccharidosis patient registry
Universitätsmedizin Mainz
Villa Metabolica - Schwerpunktbereich angeborene Stoffwechselerkrankungen

GERMANIA

Schleswig-Holstein
KIEL

German Lymph Node Registry - tumor bank
Universitätsklinikum Schleswig-Holstein - Campus Kiel
Sektion Hämatopathologie und Lymphknotenregister am Institut für Pathologie

GRECIA

GREECE
ATHENS

National Registry for Haemoglobinopathies in Greece (NRHG)
Laiko General Hospital
Thalassaemia Centre

PAESI BASSI

Gelderland
NIJMEGEN

AGORA: biobank (DNA) for congenital anomalies and childhood cancer
Radboudumc - Radboud universitair medisch centrum
Afdeling Kinderurologie

PAESI BASSI

Gelderland
NIJMEGEN

AGORA: biobank (DNA) for congenital anomalies and childhood cancer
Radboudumc - Radboud universitair medisch centrum
Afdeling Health Evidence

PAESI BASSI

Zuid-Holland
LEIDEN

Biobank Hemoglobinopathy (DNA)
LUMC - Leids Universitair Medisch Centrum
Afdeling Klinische Genetica

REGNO UNITO; GRAN BRETAGNA

Buckinghamshire
AMERSHAM

UK mucopolysaccharidosis registry
MPS House
The Society for Mucopolysaccharide Diseases

REGNO UNITO; GRAN BRETAGNA

Greater London
LONDON

EHR: European Haemoglobinopathy Registry
North West London Hospitals NHS - Central Middlesex Hospital
Middlesex Sickle Cell & Thalassaemia Centre

REGNO UNITO; GRAN BRETAGNA

Greater Manchester
ADDRESS: NOT PROVIDED - UK

NHR: National Haemoglobinopathy Registry
Institution: Information not provided - UK

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

REHem-AR-SEHOP: Spanish Registry of Hemoglobinopathies and Rare Anemias from the Spanish Society of Paediatric Haematology and Oncology
Hospital Materno Infantil Gregorio Marañón
Sección de Oncología y Hematología Pediátricas y del Adolescente

SPAGNA

Madrid
MADRID

Finanziato da un ente associato a IRDiRCERN [TRANSPLANT-CHILD] - PETER: PaEdiatric Transplantation European Registry
Hospital Universitario La Paz
Servicio de Hepatología infantil

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

SVEZIA

Region Skåne
LUND

IKBKGbase: Mutation registry for Nemo deficiency
Lund University
Department of Experimental Medical Science

SVEZIA

Region Skåne
LUND

RAG1base: Mutation registry for autosomal recessive RAG1 deficiency
Lund University
Department of Experimental Medical Science

SVEZIA

Region Skåne
LUND

RAG2base: Mutation registry for autosomal recessive RAG2 deficiency
Lund University
Department of Experimental Medical Science

SVEZIA

Region Skåne
LUND

WASbase: Mutation registry for Wiskott-Aldrich syndrome (WAS)
Lund University
Department of Experimental Medical Science

SVEZIA

Region Skåne
LUND

ORAI1base: Mutation registry for Severe combined immunodeficiency
Lund University
Department of Experimental Medical Science

AUSTRALIA

Victoria
MEKBOURNE

Lymphoma and Related Diseases Registry (LaRDR)
Monash University
Department of Epidemiology & Preventive Medicine

AUSTRALIA

Victoria
MEKBOURNE

Myelodysplastic Syndromes Registry (MDS)
Monash University
Department of Epidemiology & Preventive Medicine

AUSTRALIA

Western Australia
MURDOCH

Finanziato da un ente associato a IRDiRCGaucher disease registry model
Murdoch University
Centre for Comparative Genomics (CCG)

AUSTRIA

OBERÖSTERREICH
LINZ

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

AUSTRIA

OBERÖSTERREICH
LINZ

Non-Interventional, web-based Registry for Histiocytic Disorders
Ordensklinikum Linz GmbH Elisabethinen
Interne 1 - Hämatologie mit Stammzelltransplantation, Hämostaseologie und medizinische Onkologie

AUSTRIA

SALZBURG
SALZBURG

AGMT (Arbeitsgemeinschaft medikamentöse Tumortherapie): Austrian Registry on Hypomethylating Agents in Myeloid Neoplasms
Universitätsklinikum der Paracelsus Medizinischen Privatuniversität
Universitätsklinik für Innere Medizin III

AUSTRIA

TIROL
INNSBRUCK

MDS: Austrian myelodysplastic syndromes patient registry - contributes to the European Myelodysplastic Syndromes (MDS) Registry
Medizinische Universität Innsbruck
Universitätsklinik für Innere Medizin V - Hämatologie und Onkologie

BELGIO

ARRONDISSEMENT BRUSSELS-CAPITAL
BRUSSELS

EUNEFRON: registry of the European network for the study of orphan nephropathies
Cliniques universitaires Saint-Luc - UCLouvain
Laboratory of Nephrology

BELGIO

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

BULGARIA

 South Central region
PLOVDIV

National registry of patients with Gaucher disease - BG
BAPES - Bulgarian Association for Promotion of Education and Science
Information Centre for Rare Diseases and Orphan Drugs

BULGARIA

 South Central region
PLOVDIV

National registry of patients with mucopolysaccharidosis type II (MPS2) - BG
BAPES - Bulgarian Association for Promotion of Education and Science
Information Centre for Rare Diseases and Orphan Drugs

FRANCIA

ILE-DE-FRANCE
CLICHY

French certified registry of patients affected by Gaucher disease
CHU Paris Nord-Val de Seine - Hôpital Beaujon
Service de médecine interne

FRANCIA

ILE-DE-FRANCE
PARIS

FROG: FRench Observatory on Gaucher disease
Actelion Pharmaceuticals France SAS

FRANCIA

ILE-DE-FRANCE
PARIS

European LeukoDataBase
CHU Paris - Hôpital Robert Debré
Centre de référence des leucodystrophies

FRANCIA

ILE-DE-FRANCE
PARIS

French severe chronic neutropenia certified patient registry - contributes to the SCN international registry (SCNIR)
CHU Paris Est - Hôpital d'Enfants Armand-Trousseau
Service d'Hématologie - Oncologie pédiatrique

FRANCIA

ILE-DE-FRANCE
PARIS

GMF: French registry of myelodysplastic syndromes and leukemia chemo- and radio-induced
CHU Paris-GH St-Louis Lariboisière F.Widal - Hôpital Saint-Louis
Groupe Francophone des Myélodysplasies (GFM)

FRANCIA

ILE-DE-FRANCE
PARIS

CoF-AT study: a French cohort on ataxia-telangiectasia
CLCC Institut Curie
Cancer et génome: bioinformatique, biostatistiques et épidémiologie d'un système complexe

FRANCIA

ILE-DE-FRANCE
PARIS

CoF-AT study: a French cohort on ataxia-telangiectasia
CLCC Institut Curie
Service de Génétique

FRANCIA

ILE-DE-FRANCE
VILLEJUIF

French registry of child hematological malignancies
GHU Paris-Sud - Hôpital Paul Brousse
Epidémiologie environnementale des cancers

FRANCIA

ILE-DE-FRANCE
VILLEJUIF

French registry of adult lymphomas
GHU Paris-Sud - Hôpital Paul Brousse
Epidémiologie environnementale des cancers

FRANCIA

PROVENCE-ALPES-COTE D'AZUR
MARSEILLE

LEA - Multicentric prospective cohort of children and adolescents malignant hemopathies
CHU de Marseille - Hôpital de la Timone
Evaluation des systèmes de soins et santé perçue

GERMANIA

Baden-Württemberg
FREIBURG

GERMANIA

Baden-Württemberg
FREIBURG

Finanziato da un ente associato a IRDiRCGAIN-Biobank: Consortial Biobank for patients with Inborn Errors of Multi-Organ Autoimmune Diseases
CCI am Universitätsklinikum Freiburg
Centrum für Chronische Immundefizienz

GERMANIA

Baden-Württemberg
HEIDELBERG

GPOH-registry sickle cell disease
Zentrum für Kinder- und Jugendmedizin - Angelika-Lautenschläger-Klinik
Klinik für Kinderheilkunde III - Pädiatrische Onkologie, Hämatologie, Immunologie und Pneumologie

GERMANIA

Baden-Württemberg
MANNHEIM

Register for rare myeloproliferative neoplasms
Universitätsmedizin Mannheim
III. Medizinische Klinik

GERMANIA

Hamburg
HAMBURG

Finanziato da un ente associato a IRDiRCMucopolysaccharidosis type 1 (MPS I) Registry - DE
UKE - Universitätsklinikum Hamburg-Eppendorf
Klinik und Poliklinik für Kinder- und Jugendmedizin

GERMANIA

Hamburg
HAMBURG

Finanziato da un ente associato a IRDiRCInternational Collaborative Gaucher Group (ICGG) Gaucher Registry - DE
UKE - Universitätsklinikum Hamburg-Eppendorf
Klinik und Poliklinik für Kinder- und Jugendmedizin

GERMANIA

Hamburg
HAMBURG

Finanziato da un ente associato a IRDiRCFabry Disease Registry -DE
UKE - Universitätsklinikum Hamburg-Eppendorf
Klinik und Poliklinik für Kinder- und Jugendmedizin

GERMANIA

Hamburg
HAMBURG

Hunter Outcome Survey (HOS): patient registry - DE
UKE - Universitätsklinikum Hamburg-Eppendorf
Klinik und Poliklinik für Kinder- und Jugendmedizin

GERMANIA

Hessen
FRANKFURT AM MAIN

Ataxia-Telangiectasia patient registry - contributes to the ESID Database
Klinikum der Johann Wolfgang Goethe-Universität Frankfurt
Schwerpunkt Allergologie, Pneumologie und Mukoviszidose

GERMANIA

Hessen
MARBURG

German national case collection of familial pancreatic cancer
Universitätsklinikum Gießen und Marburg GmbH, Standort Marburg
Klinik für Visceral- Thorax- und Gefäßchirurgie

GERMANIA

Niedersachsen
HANNOVER

Central national database for incidence and outcome of congenital bone marrow failure syndromes, biobank and database of the BMFS-Network
Medizinische Hochschule Hannover
Koordinationsstelle des Netzwerkes für angeborene Störungen der Blutbildung

GERMANIA

Niedersachsen
HANNOVER

Finanziato da un ente associato a IRDiRCSCNIR: neutropenia cell bank
Medizinische Hochschule Hannover
SCNIR - Europazentrale

GERMANIA

Nordrhein-Westfalen
DÜSSELDORF

MDS Registry: German myelodysplastic syndromes patient registry
Universitätsklinikum Düsseldorf
Klinik für Hämatologie, Onkologie und Klinische Immunologie

GERMANIA

Nordrhein-Westfalen
DÜSSELDORF

German central registry for Sickle cell disease
Universitätsklinikum Düsseldorf
Klinik für Kinder-Onkologie, -Hämatologie und klinische Immunologie

GRECIA

ATTIKI
ATHENS

IRLANDA

County Dublin
DUBLIN

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

IRLANDA

County Dublin
DUBLIN

Hunter Outcome Survey (HOS): patient registry
Children's Health Ireland @ Temple Street
National Centre for Inherited Metabolic Disorders

ISRAELE

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

ITALIA

LAZIO
ROMA

RIAT: Registro Italiano per l'Atassia Teleangiectasia
A.O. S. Andrea
Servizio di Genetica Medica

ITALIA

LAZIO
ROMA

ITALIA

LAZIO
ROMA

Database dei linfomi
Azienda Ospedaliera Sant'Andrea

ITALIA

LIGURIA
GENOVA

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

ITALIA

LOMBARDIA
PAVIA

EUMDS: European Registry for Myelodysplastic Syndromes - part of EuroLeukemiaNet (ELN)
Fondazione IRCCS Policlinico San Matteo
S.C. Ematologia

ITALIA

LOMBARDIA
PAVIA

Registro Italiano Sindromi Mielodisplastiche
Fondazione IRCCS Policlinico San Matteo
S.C. Ematologia

ITALIA

TOSCANA
FIRENZE

Biogene- Biobanca di materiale biologico da pazienti affetti da malattie rare genetiche
Azienda Ospedaliero Universitaria Careggi
S.O.D. Diagnostica Genetica

ITALIA

TOSCANA
FIRENZE

Registro della Cardiomiopatia Ipertrofica da malattia di Anderson-Fabry
Azienda Ospedaliero Universitaria Careggi
Dipartimento Cardiotoracovascolare

ITALIA

TOSCANA
FIRENZE

Registro italiano MDS FISM
Azienda Ospedaliero Universitaria Careggi
S.O.D. Ematologia

NORVEGIA

Østlandet
OSLO

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

PAESI BASSI

Noord-Holland
AMSTERDAM

Dutch patient registry for Fabry disease
Amsterdam UMC, locatie AMC
Afdeling Erfelijke Stofwisselingsziekten

PAESI BASSI

Noord-Holland
AMSTERDAM

Dutch patient registry for Niemann-Pick Disease Type B
Amsterdam UMC, locatie AMC
Afdeling Erfelijke Stofwisselingsziekten

PAESI BASSI

Noord-Holland
AMSTERDAM

Dutch patient registry for Gaucher disease
Amsterdam UMC, locatie AMC
Afdeling Erfelijke Stofwisselingsziekten

PAESI BASSI

Noord-Holland
NAARDEN

The international Fabry registry
Genzyme Europe B.V.

PAESI BASSI

Noord-Holland
NAARDEN

The international Mps I registry
Genzyme Europe B.V.

PAESI BASSI

Utrecht
UTRECHT

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

POLONIA

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

PORTOGALLO

CENTRO
COIMBRA

PORTOGALLO

NORTE
PORTO

Portuguese Fabry patient registry - contributing to the international Fabry registry
Centro Hospitalar de S. João, EPE
Departamento de Genética

REGNO UNITO; GRAN BRETAGNA

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

REGNO UNITO; GRAN BRETAGNA

Nottinghamshire
NOTTINGHAM

Ataxia-Telangiectasia International Registry (A-T Society)
William Whitehouse
Pediatric Neurology Department

REGNO UNITO; GRAN BRETAGNA

Surrey
SUTTON

REGNO UNITO; GRAN BRETAGNA

Tyne & Wear
NEWCASTLE UPON TYNE

International A-T Registry
Newcastle upon Tyne Hospitals NHS Trust
John Walton Muscular Dystrophy Research Centre, Institute of Genetic Medicine

REGNO UNITO; GRAN BRETAGNA

West Midlands
BIRMINGHAM

Finanziato da un ente associato a IRDiRCInternational Niemann-Pick Disease Registry
Queen Elizabeth Hospital
Inherited Metabolic Disorders

REGNO UNITO; GRAN BRETAGNA

West Yorkshire
LEEDS

REGNO UNITO; GRAN BRETAGNA

West Yorkshire
LEEDS

REPUBBLICA CECA

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

SPAGNA

Aragón
ZARAGOZA

REEG: Spanish Gaucher's disease registry
Fundación Española para el estudio y terapéutica de la enfermedad de Gaucher

SPAGNA

Cataluña
BARCELONA

Spanish patient registry of myelodysplasic syndromes
Grupo Español de Síndromes Mielodisplásicos

SPAGNA

Cataluña
BARCELONA

Spanish severe chronic neutropenia registry - contributes to the SCN international registry (SCNIR)
Hospital Universitari Vall d'Hebron
Servicio de Oncología y Hematología Pediátricas

SPAGNA

Cataluña
BELLATERRA

DNA repair biobank
Universitat Autònoma de Barcelona
Grupo de inestabilidad genómica y reparación del DNA

SPAGNA

Comunidad Valenciana
VALENCIA

Epidemiologic Registry of Patients Diagnosed With Acute Myeloid Leukemia - ES
Hospital Universitario y Politécnico La Fe
Servicio de Hematología y Hemoterapia

STATI UNITI

Arizona
TUCSON

International Morquio A registry
The Carol Ann Foundation & The International Morquio Organization

STATI UNITI

Massachusetts
CAMBRIDGE

FOS : Fabry Outcome Survey
Shire Human Genetics Therapies, Inc.

STATI UNITI

Massachusetts
CAMBRIDGE

HOS : Hunter Outcome Survey
Shire Human Genetics Therapies, Inc.

STATI UNITI

Pennsylvania
UNIVERSITY PARK

The Globin Gene Server / beta globin (HBB)
Huck Institutes of the Life Sciences, Pennsylvania State University
Center for Comparative Genomics and Bioinformatics

SVEZIA

Region Skåne
LUND

BLMbase: Mutation registry for Bloom Syndrome
Lund University
Department of Experimental Medical Science

SVEZIA

Region Skåne
LUND

CASP10base: Mutation registry for Autoimmune lymphoproliferative syndrome, type II (ALPS2)
Lund University
Department of Experimental Medical Science

SVEZIA

Region Skåne
LUND

CASP8base: Mutation registry for Caspase 8 deficiency
Lund University
Department of Experimental Medical Science

SVEZIA

Region Skåne
LUND

CD3Gbase: Mutation registry for autosomal recessive CD3gamma immunodeficiency
Lund University
Department of Experimental Medical Science

SVEZIA

Region Skåne
LUND

SVEZIA

Region Skåne
LUND

DNMT3Bbase: Mutation registry for ICF syndrome
Lund University
Department of Experimental Medical Science

SVEZIA

Region Skåne
LUND

ELA2base: Mutation registry for Cyclic and congenital neutropenia
Lund University
Department of Experimental Medical Science

SVEZIA

Region Skåne
LUND

SVEZIA

Region Skåne
LUND

IL2RAbase: Mutation registry for Interleuken 2 receptor alpha deficiency
Lund University
Department of Experimental Medical Science

SVEZIA

Region Skåne
LUND

LIG4base: Mutation registry for LIG4 syndrome
Lund University
Department of Experimental Medical Science

SVEZIA

Region Skåne
LUND

MRE11Abase: Mutation registry for Ataxia-telangiectasia-like disorder (ATLD)
Lund University
Department of Experimental Medical Science

SVEZIA

Region Skåne
LUND

NPbase: Mutation registry for PNP deficiency
Lund University
Department of Experimental Medical Science

SVEZIA

Region Skåne
LUND

SVEZIA

Region Skåne
LUND

RFX5base: Mutation registry for MHCII promoter X box regulatory factor 5 deficiency
Lund University
Department of Experimental Medical Science

SVEZIA

Region Skåne
LUND

SVEZIA

Region Skåne
LUND

RFXAPbase: Mutation registry for Regulatory factor X-associated protein deficiency
Lund University
Department of Experimental Medical Science

SVEZIA

Region Skåne
LUND

SH2D1Abase: Mutation registry for X-linked lymphoproliferative syndrome (XLP)
Lund University
Department of Experimental Medical Science

SVEZIA

Region Skåne
LUND

STX11base: Mutation registry for Familial haemophagocytic lymphohistiocytosis 4 (FHL4)
Lund University
Department of Experimental Medical Science

SVEZIA

Region Skåne
LUND

TAP1base: Mutation registry for TAP1 deficiency
Lund University
Department of Experimental Medical Science

SVEZIA

Region Skåne
LUND

TAP2base: Mutation registry for TAP2 deficiency
Lund University
Department of Experimental Medical Science

SVEZIA

Region Skåne
LUND

TAPBPbase: Mutation registry for Tapasin deficiency
Lund University
Department of Experimental Medical Science

SVEZIA

Region Skåne
LUND

UNC13Dbase: Mutation registry for Familial hemophagocytic lymphohistiocytosis 3
Lund University
Department of Experimental Medical Science

SVEZIA

Region Skåne
LUND

ZAP70base: Mutation registry for autosomal recessive ZAP70 immunodeficiency
Lund University
Department of Experimental Medical Science

SVEZIA

Region Skåne
LUND

CD8Abase: Mutation registry for CD8 alpha deficiency
Lund University
Department of Experimental Medical Science

SVEZIA

Region Skåne
LUND

BIRC4base: Mutation registry for X-linked lymphoproliferative syndrome
Lund University
Department of Experimental Medical Science

SVEZIA

Region Skåne
LUND

NRASbase: Mutation registry for Autoimmune lymphoproliferative syndrome type IV
Lund University
Department of Experimental Medical Science

SVEZIA

Region Skåne
LUND

Swedish Acute Myelogenous Leukemia Registry
Skånes Universitetssjukhus
Lund onkologiskt centrum

SVEZIA

Region Stockholm
HUDDINGE

SVIZZERA

Suisse Alémanique
BERN

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

TURCHIA

TURKEY
ANKARA

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

UNGHERIA

Közép-Magyarország
DEBRECEN

Hungarian severe chronic neutropenia registry - contributes to the SCN international registry (SCNIR)
University of Debrecen
Department of children immunology and infectology

AUSTRALIA

Victoria
MEKBOURNE

Myeloma and Related Diseases Registry (MRDR)
Monash University
Department of Epidemiology & Preventive Medicine

AUSTRIA

TIROL
INNSBRUCK

Austrian chronic myeloid leukemia registry
Medizinische Universität Innsbruck
Universitätsklinik für Innere Medizin V - Hämatologie und Onkologie

AUSTRIA

WIEN
ADDRESS: NOT PROVIDED - AT

Thromboreductin-Registry
Institution: Information not provided - AT

AUSTRIA

WIEN
WIEN

Austrian myeloma registry
OeGHO Geschäftsstelle
Österreichische Gesellschaft für Hämatologie & Medizinische Onkologie

AUSTRIA

WIEN
WIEN

Austrian chronic myeloid leukemia registry
OeGHO Geschäftsstelle
Österreichische Gesellschaft für Hämatologie & Medizinische Onkologie

AUSTRIA

WIEN
WIEN

BELGIO

ARRONDISSEMENT BRUSSELS-CAPITAL
BRUSSELS

Belgian sickle cell anemia registry
Hôpital Universitaire des Enfants Reine Fabiola - HUDERF
Service d'hémato-oncologie, d'immunologie et de rhumatologie pédiatrique

BELGIO

OOST-VLAANDEREN
GENT

I-DSD: International Disorders of Sex Development registry - Flanders contribution (Ghent university hospital)
Ghent University Hospital - UZ Gent
Het Centrum voor geslachtsontwikkeling [DSD team] - UZ Gent

BULGARIA

 South Central region
PLOVDIV

National registry of patients with thalassaemia major - BG
BAPES - Bulgarian Association for Promotion of Education and Science
Information Centre for Rare Diseases and Orphan Drugs

BULGARIA

 South Central region
PLOVDIV

National registry of adult patients with chronic myeloid leukemia - BG
BAPES - Bulgarian Association for Promotion of Education and Science
Information Centre for Rare Diseases and Orphan Drugs

FRANCIA

ILE-DE-FRANCE
CRÉTEIL

French sickle cell anemia registry
Hôpitaux Universitaires Henri Mondor
Unité des Maladies Génétiques du Globule Rouge

FRANCIA

PROVENCE-ALPES-COTE D'AZUR
MARSEILLE

NaThalY: National Thalassemia Registry
CHU de Marseille - Hôpital de la Timone
Laboratoire de génétique moléculaire

GERMANIA

Baden-Württemberg
FREIBURG

National registry for Blackfan-Diamond disease
Zentrum für Kinder- und Jugendmedizin Freiburg
Klinik für Pädiatrische Hämatologie und Onkologie

GERMANIA

Baden-Württemberg
TÜBINGEN

Niemann-Pick Type C Disease Gene Variation Database
Institut für Medizinische Genetik und angewandte Genomik Tübingen
Institut für Medizinische Genetik und angewandte Genomik

GERMANIA

Baden-Württemberg
ULM

German paroxysmal nocturnal hemoglobinuria registry
DRK Baden-Württemberg/ Hessen
Institut für Klinische Transfusionsmedizin und Immungenetik Ulm

GERMANIA

Bayern
MÜNCHEN

Finanziato da un ente associato a IRDiRCEUTOS: European chronic myeloid leukemia patient registry (collaboration between the European LeukemiaNet and Novartis Europe)
LMU Klinikum der Universität München - Campus Großhadern
Institut für medizinische Informationsverarbeitung, Biometrie und Epidemiologie

GERMANIA

Hessen
GIEßEN

NHL-BFM Registry 2012: Registry of the NHL-BFM study group for all subtypes of Non-Hodgkin Lymphoma diagnosed in children and adolescents
Kinderklinik des UKGM am Standort Gießen
Abteilung für Pädiatrische Hämatologie und Onkologie

GERMANIA

Niedersachsen
HANNOVER

German Fanconi anemia registry
Medizinische Hochschule Hannover
Klinik für Pädiatrische Hämatologie und Onkologie

GERMANIA

Nordrhein-Westfalen
MÜNSTER

GERMANIA

Nordrhein-Westfalen
MÜNSTER

NHL-BFM Registry 2012: Registry of the NHL-BFM study group for all subtypes of Non-Hodgkin Lymphoma diagnosed in children and adolescents
Universitätsklinikum Münster
Klinik für Kinder- und Jugendmedizin - Pädiatrische Hämatologie und Onkologie

ITALIA

CAMPANIA
NAPOLI

RIAF: Registro Italiano Anemia di Fanconi
P.S.I. "Elena d'Aosta"
U.O.C. Servizio di Genetica

ITALIA

LAZIO
ROMA

Registro dell'emoglobinuria parossistica notturna
ISS - Istituto Superiore di Sanità
Dipartimento del Farmaco

ITALIA

LOMBARDIA
PAVIA

RIMM: Registro Italiano delle Mielofibrosi con Metaplasia Mieloide
Fondazione IRCCS Policlinico San Matteo
Laboratorio di Epidemiologia Clinica

ITALIA

PUGLIA
SAN GIOVANNI ROTONDO

Registro di pazienti in gravidanza affette da trombocitemia essenziale
IRCCS Ospedale Casa Sollievo della Sofferenza -Poliamb. Giovanni Paolo II
Laboratorio di Ematologia

ITALIA

SICILIA
PALERMO

Registro Siciliano delle Talassemie ed Emoglobinopatie (Re.S.T.E.)
Ossevatorio Epidemiologico dell Assessorato regionale

ITALIA

VENETO
VERONA

Registro Italiano per i pazienti affetti da Sindrome di Shwachman Diamond
Azienda Ospedaliera Universitaria Integrata di Verona - Ospedale Borgo Trento
Centro Fibrosi Cistica

PAESI BASSI

Gelderland
NIJMEGEN

Radboud Biobank - Iron Biobank (cell lines, DNA, serum and urine)
Radboudumc - Radboud universitair medisch centrum
Translationeel Metabool Laboratorium

PAESI BASSI

Noord-Holland
AMSTERDAM

Dutch patient registry for Niemann-Pick Disease Type C
Amsterdam UMC, locatie AMC
Afdeling Erfelijke Stofwisselingsziekten

PAESI BASSI

Noord-Holland
AMSTERDAM

The ALD Connect Patient Portal
Amsterdam UMC, locatie AMC
Laboratorium Genetische Metabole Ziekten

PAESI BASSI

Noord-Holland
NAARDEN

PORTOGALLO

NORTE
PORTO

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

REGNO UNITO; GRAN BRETAGNA

Greater Manchester
MANCHESTER

Registry for Patients with Niemann-Pick Type C Disease
St Mary's Hospital
Manchester Cente for Genomic Medicine

REGNO UNITO; GRAN BRETAGNA

North Yorkshire
YORK

UK & Ireland Fanconi Anaemia Registry
The University of York
Epidemiology and Genetics Unit

REGNO UNITO; GRAN BRETAGNA

Surrey
SUTTON

NSHLG - National Study of Hodgkin's Lymphoma Genetics
The Institute of Cancer Research
Section of Epidemiology

REGNO UNITO; GRAN BRETAGNA

West Midlands
BIRMINGHAM

EBV associated NK/T cell malignancies registry
University of Birmingham
Institute for cancer studies

SPAGNA

Castilla - León
SALAMANCA

National DNA Bank: Rare diseases sample collection
Centro de Investigación del Cáncer (USAL-CSIC)
Banco Nacional de ADN

SPAGNA

Madrid
MADRID

Spanish Registry of Patients with Fanconi Anemia
CIEMAT - Centro de Investigaciones Energéticas Medioambientales y Tecnológicas
Terapias innovadoras en el sistema hematopoyético

STATI UNITI

Illinois
CHICAGO

PNH Registry: Paroxysmal Nocturnal Hemoglobinuria registry
ICON Clinical Research - Lifecycle science group
ICON Clinical Research

STATI UNITI

New York
NEW YORK

IFAR: International Fanconi Anemia patient Registry
The Rockefeller University
Laboratory of Genome Maintenance

SVEZIA

Region Skåne
LUND

ADAbase: Mutation registry for Adenosine deaminase deficiency (ADA)
Lund University
Department of Experimental Medical Science

SVEZIA

Region Skåne
LUND

AICDAbase: Mutation registry for Non-X-linked hyper-IgM syndrome
Lund University
Department of Experimental Medical Science

SVEZIA

Region Skåne
LUND

AP3B1base: Mutation registry for Hermansky-Pudlak syndrome 2
Lund University
Department of Experimental Medical Science

SVEZIA

Region Skåne
LUND

CD3Dbase: Mutation registry for Autosomal recessive CD3delta deficiency
Lund University
Department of Experimental Medical Science

SVEZIA

Region Skåne
LUND

CD3Ebase: Mutation registry for autosomal recessive CD3epsilon immunodeficiency
Lund University
Department of Experimental Medical Science

SVEZIA

Region Skåne
LUND

CD40base: Mutation registry for CD40 deficiency (previously known as TNFRSF5base)
Lund University
Department of Experimental Medical Science

SVEZIA

Region Skåne
LUND

DCLRE1Cbase: Mutation registry for Artemis deficiency
Lund University
Department of Experimental Medical Science

SVEZIA

Region Skåne
LUND

DKC1base: Mutation registry for Hoyeraal-Hreidarsson syndrome and dyskeratosis congenita
Lund University
Department of Experimental Medical Science

SVEZIA

Region Skåne
LUND

GFI1base: Mutation registry for SCN and NI-CINA
Lund University
Department of Experimental Medical Science

SVEZIA

Region Skåne
LUND

IL7Rbase: Mutation registry for Interleukin-7 receptor alpha deficiency
Lund University
Department of Experimental Medical Science

SVEZIA

Region Skåne
LUND

JAK3base: Mutation registry for autosomal recessive severe combined JAK3 deficiency
Lund University
Department of Experimental Medical Science

SVEZIA

Region Skåne
LUND

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

SVEZIA

Region Skåne
LUND

PTPRCbase: Mutation registry for CD45 deficiency
Lund University
Department of Experimental Medical Science

SVEZIA

Region Skåne
LUND

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

SVEZIA

Region Skåne
LUND

SBDSbase: Mutation registry for Shwachman-Diamond syndrome
Lund University
Department of Experimental Medical Science

SVEZIA

Region Skåne
LUND

TAZbase: Mutation registry for Barth syndrome
Lund University
Department of Experimental Medical Science

SVEZIA

Region Skåne
LUND

UNGbase: Mutation registry for UNG deficiency (Hyper-IgM syndrome, type 5)
Lund University
Department of Experimental Medical Science

SVEZIA

Region Skåne
LUND

CD40Lbase: Mutation registry for X-linked Hyper-IgM syndrome (XHIM)
Lund University
Department of Experimental Medical Science

SVEZIA

Region Skåne
LUND

MAPBPIPbase: Mutation registry for Endosomal adaptor protein p14 deficiency
Lund University
Department of Experimental Medical Science

SVEZIA

Region Uppsala
UPPSALA

Swedish Chronic Myeloid Leukemia Registry
Akademiska Sjukhuset
Regionalt Onkologiskt Centrum

SVEZIA

Region Västra Götaland
GÖTEBORG

Swedish Multiple Myeloma Registry
Sahlgrenska Universitetssjukhuset
Göteborg onkologiskt centrum

AUSTRIA

SALZBURG
SALZBURG

AGMT (Arbeitsgemeinschaft medikamentöse Tumortherapie): PTCL registry (T-cell lymphoma in Austria)
Universitätsklinikum der Paracelsus Medizinischen Privatuniversität
Universitätsklinik für Innere Medizin III

AUSTRIA

STEIERMARK
GRAZ

Styrian registry of congenital anomalies - contributes to the EUROCAT network
Medizinische Universität Graz
Forschungsverein zur Registrierung steirischer Geburtsfehlbildungen

AUSTRIA

WIEN
WIEN

AGMT (Arbeitsgemeinschaft medikamentöse Tumortherapie): ALL-Registry and Biobank
Allgemeines Krankenhaus der Stadt Wien
Klinische Abteilung für Hämatologie und Hämostaseologie

AUSTRIA

WIEN
WIEN

AUSTRIA

WIEN
WIEN

Registry for relapsing acute lymphoblastic leukemia in childhood and adolescence
St. Anna Kinderspital
Zentrum für Kinder- und Jugendheilkunde

BELGIO

ANTWERPEN
ANTWERPEN

Antwerpen registry of congenital anomalies - contributes to the EUROCAT network
Provinciaal Instituut voor Hygiëne (PIH)- Antwerpen
EUROCAT Belgium_Antwerpen

BELGIO

HAINAUT
GOSSELIES

Hainaut and Namur registry of congenital anomalies - contributes to the EUROCAT network
Institut de Pathologie et de Génétique
Département de Génétique Clinique - Institut de Pathologie et de Génétique (IPG)

DANIMARCA

Syddanmark
ODENSE

Funen county registry of congenital anomalies - contributes to the EUROCAT network
University of Southern Denmark
Epidemiology department

FINLANDIA

Finland
HELSINKI

Register of Congenital Malformations
Terveyden ja hyvinvoinnin laitos (THL)
Finnish Institute for Health and Welfare (THL)

FRANCIA

AUVERGNE-RHONE-ALPES
CLERMONT-FERRAND

Auvergne registry of congenital anomalies - contributes to the EUROCAT network
CHU de Clermont-Ferrand - Hôpital d'Estaing
Service de génétique médicale

FRANCIA

AUVERGNE-RHONE-ALPES
LYON

Rhône-Alpes registry of congenital anomalies - contributes to the EUROCAT network
Registre des Malformations en Rhône Alpes
Registre des Malformations en Rhône Alpes REMERA

FRANCIA

BRETAGNE
RENNES

FRANCIA

ILE-DE-FRANCE
PARIS

FRANCIA

ILE-DE-FRANCE
PARIS

French certified patient registry for Langerhans cell histiocytosis
CHU Paris Centre - Hôpital Cochin, Site Cochin
Unité fonctionnelle de Médecine interne et centre de référence maladies rares

FRANCIA

ILE-DE-FRANCE
PARIS

French certified patient registry for Langerhans cell histiocytosis
CHU Paris Est - Hôpital d'Enfants Armand-Trousseau
Service d'Hématologie - Oncologie pédiatrique

FRANCIA

ILE-DE-FRANCE
PARIS

Biobank of the French certified patient registry for Langerhans cell histiocytosis
CHU Paris Est - Hôpital d'Enfants Armand-Trousseau
Service d'Hématologie - Oncologie pédiatrique

FRANCIA

ILE-DE-FRANCE
PARIS

French certified patient registry for Langerhans cell histiocytosis
CHU Paris-GH St-Louis Lariboisière F.Widal - Hôpital Saint-Louis
Service de pneumologie

FRANCIA

NOUVELLE AQUITAINE
BORDEAUX

Registry and pronostic cohort of cutaneous lymphomas in Aquitaine
CHU de Bordeaux - Hôpital Saint André
Unité de Dermatologie Cancérologie

FRANCIA

NOUVELLE AQUITAINE
BORDEAUX

Primary central nervous system tumors registry of Gironde
Université Bordeaux 2 - Victor Ségalen
Institut de Santé Publique, d'Épidémiologie et de Développement

FRANCIA

OUTRE-MER
FORT DE FRANCE

French West Indies registry of congenital anomalies - contributes to the EUROCAT network
CHU de Martinique - Maison de la Femme, de la Mère et de l'Enfant
Centre Pluridisciplinaire de Diagnostic Prénatal (CPDP)

FRANCIA

OUTRE-MER
SAINT-PIERRE

La Réunion Fench Island registry of congenital anomalies - contributes to the EUROCAT network
CHU de la Réunion - GH Sud Réunion - Saint-Pierre
Service de Génétique Médicale

GERMANIA

Hessen
FRANKFURT AM MAIN

German registry for Langerhans Cell Histiocytosis in childhood (LCH-REG-DE 2013)
Klinikum der Johann Wolfgang Goethe-Universität Frankfurt
Schwerpunkt Onkologie, Hämatologie und Hämostaseologie

GERMANIA

Hessen
FRANKFURT AM MAIN

GMALL-registry: registry for adult patients with acute lymphoblastic leukemia or related diseases
Klinikum der Johann Wolfgang Goethe-Universität Frankfurt
Medizinische Klinik II - Hämatologie, Onkologie, Hämostaseologie, Rheumatologie, Infektiologie

GERMANIA

Hessen
FRANKFURT AM MAIN

GMALL-registry: Biobank for adult patients with acute lymphoblastic leukemia or related diseases
Klinikum der Johann Wolfgang Goethe-Universität Frankfurt
Medizinische Klinik II - Hämatologie, Onkologie, Hämostaseologie, Rheumatologie, Infektiologie

GERMANIA

Mecklenburg-Vorpommern
ROSTOCK

GERMANIA

Nordrhein-Westfalen
KREFELD

Central Cutaneous Lymphoma Registry
HELIOS Klinikum Krefeld
Klinik für Dermatologie

GERMANIA

Rheinland-Pfalz
MAINZ

German childhood cancer registry (Partner of ACCIS: Automated Childhood Cancer Information System, Member of IACR and ENCR)
Institut für Medizinische Biometrie, Epidemiologie und Informatik (IMBEI)
Deutsches Kinderkrebsregister am IMBEI

GERMANIA

Rheinland-Pfalz
MAINZ

Mainz registry of congenital anomalies - contributes to the EUROCAT network
Universitätsmedizin Mainz
Geburtenregister Mainzer Modell

GERMANIA

Sachsen-Anhalt
MAGDEBURG

Centre Saxony-Anhalt registry of congenital anomalies - contributes to the EUROCAT network
Universitätsklinikum Magdeburg A.ö.R
MONZ - Fehlbildungsmonitoring Sachsen-Anhalt

IRLANDA

County Cork
CORK

IRLANDA

County Dublin
DUBLIN

Dublin registry of congenital anomalies - contributes to the EUROCAT network
Health Services Executive
HSE Registry of Congenital Anomalies (East)

IRLANDA

County Kilkenny
KILKENNY

South East of Ireland registry of congenital anomalies - part of BINOCAR and EUROCAT network
Health Service Executive South SE
South East of Ireland registry of congenital anomalies

ITALIA

CAMPANIA
BENEVENTO

Registro Campano difetti congeniti- afferisce al network EUROCAT
A.O.R.N. "Gaetano Rummo"
U.O.C. di Genetica Medica

ITALIA

PUGLIA
VALENZANO

registro della talassemia multiregionale italiana
Fondazione per la Ricerca Farmacologica Gianni Benzi
Fondazione per la Ricerca Farmacologica Gianni Benzi Onlus

ITALIA

SICILIA
CATANIA

ISMAC: Registro siciliano di anomalie congenite - afferisce al network EUROCAT
ASMAC
Associazione per la Prevenzione Sociale e per il Trattamento delle Malformazioni Congenite

ITALIA

TOSCANA
FIRENZE

Registro italiano LCH - Istiocitosi a cellule di Langerhans
Azienda Ospedaliera Universitaria Anna Meyer
D.A.I. Oncoematologia

ITALIA

TOSCANA
PISA

Registro Toscano Difetti Congeniti
Fondazione "Gabriele Monasterio" - Consiglio Nazionale delle Ricerche CNR
Unità di Ricerca Epidemiologia Ambientale e Registri di Patologia

ITALIA

VENETO
PADOVA

Registro delle anomalie congenite in tutta l'area del nord-est Italia - afferisce al network EUROCAT
Azienda Ospedaliera di Padova
U.O.C. Genetica Clinica ed Epidemiologica

MALTA

MALTA
G'MANGIA

MALTA CONGENITAL ANOMALIES REGISTRY (MCAR) - it contributes to EUROCAT
Ministry for Health
Directorate of Health Information and Research

PAESI BASSI

Groningen
GRONINGEN

EUROCAT Northern Netherlands - contributes to the international EUROCAT network
UMCG - Universitair Medisch Centrum Groningen
Afdeling Genetica

POLONIA

Poznan
POZNAN

PRCM: Polish registry of congenital malformations - contributes to the EUROCAT network
Uniwersytet Medyczny im. Karola Marcinkowskiego w Poznaniu
Zaklad Genetyki Medycznej

PORTOGALLO

SUL
LISBOA

RENAC - Portuguese registry of congenital anomalies (contributes to the EUROCAT network)
Instituto Nacional de Saúde Dr. Ricardo Jorge - Lisboa
Departamento de Epidemiologia

REGNO UNITO; GRAN BRETAGNA

Hampshire
SOUTHAMPTON

WANDA - Wessex registry of antenatally detected anomalies - part of BINOCAR and EUROCAT network
Princess Anne Hospital
Paediatric Endocrinology and the Wessex Clinical Genetics Service

SPAGNA

Cataluña
BARCELONA

Spanish registry of pulmonary Langerhans cell histiocytosis
Hospital de la Santa Creu i Sant Pau
Servicio de Neumología

SPAGNA

Madrid
MADRID

Spanish Academy of Dermatology and Venereology (AEDV) Registry of primary cutaneous lymphoma
Academia Española de Dermatología y Venereología
Unidad de investigación de la Fundación Academia Española de Dermatología y Venereología

SVEZIA

Region Skåne
LUND

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

SVEZIA

Region Skåne
LUND

Swedish Acute Lymphoblastic Leukemia Registry
Skånes Universitetssjukhus
Lund onkologiskt centrum

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

SVIZZERA

Suisse Romande
LAUSANNE

EUROCAT VAUD Switzerland - Registry of congenital malformations of canton Vaud
Centre Hospitalier Universitaire Vaudois CHUV
Département Femme-Mère-Enfant - Maternité

GERMANIA

Hessen
GIEßEN

LBL Registry: Registry for children with lymphoblastic lymphoma
Kinderklinik des UKGM am Standort Gießen
Abteilung für Pädiatrische Hämatologie und Onkologie

GERMANIA

Nordrhein-Westfalen
MÜNSTER

LBL Registry: Registry for children with lymphoblastic lymphoma
Universitätsklinikum Münster
Klinik für Kinder- und Jugendmedizin - Pädiatrische Hämatologie und Onkologie

GERMANIA

Baden-Württemberg
ULM

German marginal zone lymphoma registry
Universitätsklinikum Ulm
Institut für Experimentelle Tumorforschung

GERMANIA

Baden-Württemberg
ULM

German follicular lymphoma registry
Universitätsklinikum Ulm
Institut für Experimentelle Tumorforschung

GERMANIA

Rheinland-Pfalz
MAINZ

EMCL-REGISTRY: European Mantle cell lymphoma registry
Universitätsmedizin Mainz
III. Medizinische Klinik und Poliklinik

Network di registri and biobanche

GERMANIA

Niedersachsen
HANNOVER

SCNIR: Severe Chronic Neutropenia International Registry
  • Medizinische Hochschule Hannover
  • SCNIR - Europazentrale
  • REGNO UNITO; GRAN BRETAGNA

    Antrim and Newtownabbey
    NEWTOWNABBEY