Patient Registries

 

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.

VASCERN 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.

Our Patient Registry Working Group is responsible for this workpackage and the VASCERN Registry Technical Team meets every 3 weeks in order to discuss the technical aspects of the individual RDWG registry databases, their FAIRification, and their evolution.

For more information on the Patient Registry working group and its members click here

To learn more about the FAIR principles, read the following publication on FAIR here

 

VASCERN Registries EU Grant Project (2020-2023)

 

The VASCERN Registries project aims to reach the objective of developing our rare disease registries in order to reinforce our research capabilities and the knowledge about rare vascular diseases. Our project can be viewed as either a unique registry, with the core data elements required for all rare vascular disease patients and the specific disease elements varying for each 5 Rare Disease Working Groups (RDWGs), or 5 different registries with a common core making interoperability and epidemiological studies on the whole population of patients seen within the ERN possible.

To learn more abou this project take a look at our informational poster below:

 

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