The Patient Registry Working Group is chaired by Prof. Leo Schultze Kool from The Radboud university medical center in Nijmegen, The Netherlands.

Registries are necessary in all types of research and for epidemiological surveillance. As rare diseases are rare and patient numbers are therefore often limited, sharing of data is absolutely crucial.

The Patient Registry-WG aims to build rare vascular disease registries and to make already existing registries accessible by using the FAIR principles.

The FAIR data principles are a set of principles used to make data findable, accessible, interoperable and reusable (FAIR). They also provide the guidelines for good scientific data management and stewardship in order to maximize the use of valuable research data by the scientific community. In order to make data FAIR, the first step is to make data findable, by assigning a globally unique and persistent identifier to data/metadata. Next, one must describe data/metadata using ontologies and vocabularies and generating machine-readable data. A semantic model, that describes the relations between the concepts, can be made in order to create this machine-readable data. The accessibility of the data must be also well defined. Metadata can be made available on a FAIR Data Point, making it findable online. Finally, data must be reusable, meaning that it can be reproduced and reused, so it must be richly described and provide clear usage licenses and accurate information on its provenance.

Work Package on Patient Registry

Several RDWG specific registry projects are ongoing, including the pilot project: VASCERN VASCA FAIR Registry which is underway. The plan for VASCERN is to start with local registries where the structure (minimal dataset) and program used for each database is FAIR compatible and can be extended upon later. The metadata model has now been implemented on a server where 8 VASCA expert centers will have a registry on that server. The secure server is located in Amsterdam. Once the registry has been tested by the VASCA expert centers, it may be extended to include other RDWGs of VASCERN.

To keep up to date on the latest developments from the Patient Registry Working Group, please visit the Patient Registries page here

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NETHERLANDS

Chair

Pr. Leo SCHULTZE KOOL
Expertcenter for Hemangioma and Vascular Anomalies (Hecovan)
Radboud university medical center
Nijmegen, Netherlands

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BELGIUM

Dr. Sarah THOMIS
Lymphovenous Center
University Hospitals Leuven
Leuven, Belgium

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FRANCE

Dr. Sophie DUPUIS-GIROD
CRMR Rendu-Osler Disease HHT Center of Reference
CHU de Lyon HCL – GH Est-Hôpital Femme Mère Enfant
Lyon, France

allemagne

GERMANY

Dr. Christian-Alexander BEHRENDT
Department of Vascular Medicine
Department of General and Interventional Cardiology
University Heart Center Hamburg
University Medical Center Hamburg-Eppendorf
Rarevasc.org
Hamburg, Germany

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HUNGARY

Dr. Kalman BENKE
Semmelweis University, Heart and Vascular Center
Budapest, Hungary

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IRELAND

Pr. Alan IRVINE
Dermatology Department
Our Lady’s Children’s Hospital Crumlin
Dublin, Ireland

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ITALY

Patient Advocate

Claudia CROCIONE
HHT Europe
Associazione Italiana Teleangectasia Emorragica – HHT ONLUS

Dr. Alessandro PINI
Centro Malattie Rare Cardilogiche,
Azienda Socio Sanitaria Territoriale Fatebenefratelli – Sacco
Milan, Italy

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NETHERLANDS

Dr Ingrid VAN DE LAAR
Erasmus Medical Center
Rotterdam, Netherlands

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