New video shows benefits of making FAIR Registries

A new video, highlighting the importance of FAIR registries, appeared in the October newsletter of the International Society for the Study of Vascular Anomalies (ISSVA). It is a great video to share with anyone interested in rare disease research and data sharing.

The video gives a clear and helpful explanation of the problems faced by healthcare providers in the rare disease field, when trying to link patient data in order to perform research and/or discover new treatment options, and how these problems can be solved with a FAIR registry using ontologies and sematic technology.

Take a look at the video here

As a reminder FAIR refers to “The FAIR (Findable, Accessible, Interoperable, and Reusable) principles, published in 2016 and now widely endorsed, are guidelines which allow registries to be computer findable, or searchable, without sacrificing privacy or losing control of data by the individual hospitals. That is because only the general information about the registry (metadata) and its accessibility policy is visible, while records (data) stay protected in the institution. It means that multiple registries can be searched or found, without institutions losing control of their data. The real-time interoperability among registries is still a long way from being realized, but developments are happening quickly. One of the first steps would be to annotate all information related to the registry and its data with ontologies, uniquely identified terms from a classification which, combined with semantic models, allow computers to capture information and understand relationships. With findable registries, clear access policies, and well-annotated records, it becomes easy to reuse data.

The full article in the ISSVA newsletter equally describes the Registry of Rare Vascular Anomalies (VASCA), lead by Professor Leo Schultze Kool (Chair of VASCERN’s Registries Working Group), and how the ISSVA classification was turned into an ontology in order to be included in this FAIR registry. The video was created by Bruna Dos Santos Vieira (VASCA Registry Data Steward, part of the VASCERN registries project team).

Read the full ISSVA article here

For more information on the VASCERN Registries project take a look at our poster here.

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