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Funded by an IRDiRC member = Member of a ERN =
Research projects

BELGIUM
ARRONDISSEMENT BRUSSELS-CAPITAL
BRUXELLES
Treat vascular anomalies
de Duve Institute
Laboratory of Human Genetics

SPAIN
Madrid
MADRID
Clinically and molecularly redefining complex vascular malformations: Evaluation of new genes and new pathologies by massive sequencing
INGEMM - Instituto de Genética Médica y Molecular (IdiPAZ)
Sección de Genómica Estructural y Funcional

AUSTRIA
WIEN
WIEN
E-TRAB: Geriatric Assessment of Elderly "Unsuited" Patients Receiving Trabectedin in First Line Treatment For Advanced Soft Tissue Sarcomas - AT
Allgemeines Krankenhaus der Stadt Wien
Klinische Abteilung für Onkologie

GERMANY
Baden-Württemberg
STUTTGART
COSS-Registry: Clinical Registry for children, adolescents and adults with Osteosarcoma and Bone Tumors
Klinikum Stuttgart - Standort Olgahospital
COSS (Cooperative OsteoSarkom Studiengruppe) Studienzentrale

GERMANY
Bayern
ERLANGEN
Late Effects Surveillance System (LESS) for oncological diseases in children und adolescents
Kinder- und Jugendklinik des Universitätsklinikums Erlangen
Kinder- und Jugendklinik

SPAIN
Madrid
MADRID
Spanish Academy of Dermatology and Venereology (AEDV) Registry of hemangioma
Academia Española de Dermatología y Venereología
Unidad de investigación de la Fundación Academia Española de Dermatología y Venereología

UNITED STATES
Washington
ADDRESS: NOT PROVIDED - US
Clinical and molecular studies of malformations
Institution: Information not provided - US

UNITED STATES
Washington
ADDRESS: NOT PROVIDED - US
Molecular studies of malformations
Institution: Information not provided - US

AUSTRIA
WIEN
WIEN
MRI Evaluation of Nidus Occlusion After Gamma Knife Radiosurgery of Cerebral Arteriovenous Malformations - A Prospective Preliminary Study
Allgemeines Krankenhaus der Stadt Wien
Universitätsklinik für Neurochirurgie

BELGIUM
ANTWERPEN
ANTWERPEN-EDEGEM
SEC: Sensitivity and Accuracy of Prenatal Diagnosis of Severe Congenital Heart Diseases in the Antwerp Region
University Hospital of Antwerp - UZA
Dienst gynaecologie-verloskunde, Prenatale diagnose

FRANCE
ILE-DE-FRANCE
BOULOGNE-BILLANCOURT
Impact of pulmonary disorder and effect of embolization of pulmonary arteriovenous malformations on the quality of life in the Rendu-Osler disease
CHU Paris IdF Ouest - Hôpital Ambroise Paré
Service de Radiologie

GERMANY
Hessen
FRANKFURT AM MAIN
Long-term observation of quality of life and participation in social life with special emphasis on the cognitive function of patients who have been treated for arteriovenous malformation in childhood
Klinikum der Johann Wolfgang Goethe-Universität Frankfurt
Klinik und Poliklinik für Neurochirurgie

GERMANY
Hessen
FRANKFURT AM MAIN
Long-term course of patients with cerebral hemorrhage from an arteriovenous malformation with special consideration of functional quality of life and socioeconomic status
Klinikum der Johann Wolfgang Goethe-Universität Frankfurt
Klinik und Poliklinik für Neurochirurgie

GERMANY
Mecklenburg-Vorpommern
GREIFSWALD
Characterisation of somatic and intronic variants in the genes CCM1-3 and of miRNA expression regulated by CCM3
Institut für Humangenetik der Universitätsmedizin Greifswald
Institut für Humangenetik

GERMANY
Nordrhein-Westfalen
ESSEN
Evaluation of Video-assisted Instructions of Nasal Self-packing in Patients With HHT
Universitätsklinikum Essen
Klinik für Hals-Nasen und Ohrenheilkunde

ITALY
TOSCANA
SIENA
Mutational and functional genomic study in Vascular Malformations to delineate appropriate therapeutic strategies
Azienda Ospedaliera Universitaria Senese - Policlinico Santa Maria alle Scotte
U.O.C. di Genetica Medica

SPAIN
Castilla - León
SALAMANCA
Effect of endoglin expression on the capacity of MSCs to modulate angiogenesis: a potential therapeutic approach to vascular malformations characteristic of HHT
IBSAL - Instituto de Investigación Biomédica de Salamanca
Fisiopatología vascular y renal

JAPAN
JAPAN
TOKYO
Establishment of differential diagnosis method for lymphatic diseases and derivation of optimal treatment strategy utilizing refractory lymphatic vessel disease registry
National Center for Child Health and Development
Division of Surgery
Multicentric Research projects
- Istituto Ortopedico Rizzoli - Centro di Ricerca e Poliambulatorio
- S.C. Laboratorio di Oncologia Sperimentale
- University of Helsinki
- Molecular and Cancer Biology Research Unit
- Universität Potsdam
- Institut für Biochemie und Biologie
- Universitätsklinikum Magdeburg A.ö.R
- MONZ - Fehlbildungsmonitoring Sachsen-Anhalt
- Azienda Ospedaliero-Universitaria San Luigi Gonzaga
- Laboratorio di Biologia Applicata
- Department of Health
- CHU de Lyon HCL - GH Est-Hôpital Femme Mère Enfant
- Service d'epileptologie clinique, des troubles du sommeil et de neurologie fonctionnelle de l'enfant
- Centre Hospitalier Universitaire Vaudois CHUV
- Service de recherche en oncologie

ITALY
EMILIA ROMAGNA
BOLOGNA
Research group of the Italian Sarcoma Group

FINLAND
Finland
HELSINKI
LYMPHANGIOGENOMICS: genome-wide discovery and functional analysis of novel genes in lymphangiogenesis (FINISHED)

GERMANY
Brandenburg
POTSDAM
CCMCURE: Cerebral Cavernous Malformations Pharmacological Supression Screen

GERMANY
Sachsen-Anhalt
MAGDEBURG
International Clearinghouse for Birth Defects Monitoring Systems

ITALY
PIEMONTE
ORBASSANO
Characterization of the molecular and cellular and functions of KRIT1 the disease gene responsible for type 1 Cerebral Cavernous Malformations

UNITED KINGDOM
Greater London
LONDON
RASopathy network: disorders of the Ras-MAPK pathway

FRANCE
AUVERGNE-RHONE-ALPES
BRON
NEUROPED: European network of reference for rare paediatric neurological diseases

SWITZERLAND
Suisse Romande
LAUSANNE