Bring Your Own Data Meetings: Rare Disease Registries (and biobanks)

Bring Your Own Data: Rare Disease Registries (and biobanks)

and learn how to make your data linkable to resources world-wide

RD Registry BYOD

Rome, November 26-27
Best Western Hotel Globus Hotel (
following the EpiRare workshop

Preparatory webinars: 
Two webinars were held on Friday 17 Oct, and Friday 7 Nov., the slides and narrative (audio) are on the link below
Slides+audio of Webinar presentation: 

Open BYOD support Document Data Owners and Instructors
(add user questions, data descriptions, and linked data sources here)


This BYOD will bring together owners of patient registries and linked data experts together. The aim is to train patient registry experts on how to make their data interoparable (linkable) for cross-resource questions, while collaboratively making selected data interoperable. The primary audience is the rare disease community. The event is co-organised by RD-Connect, Elixir, and BioMedBridges. 

To achieve our aims we organise two days that are a combination of a hackathon and a hands-on tutorial. In advance, one or two webinars will be organised to introduce principles to attendees, and to invite experts to provide the starting points for a BYOD: a list of questions from data owners, a list of existing linked data sets by linked data experts. A BYOD starts with defining driving questions for the end goals of the BYOD. Based on previous experience, we organise events to prepare this in advance as much as possible.

In parallel, linked data experts are invited from a list maintained by DTL/Elixir-NL and RD registry owners are invited via RD-Connect. The ideal ratio between data owners and linked data experts is 1:1.

In this particular case, a webinar and discussion will be organised to acquaint linked data experts with the COEUS system as a component that RD-Connect will use to build its platform for the Rare Disease community.

At the end of a BYOD data owners understand the basic principles of making data interoperable, such that they can begin to follow this strategy. Data owners and Linked Data experts have created a minimal resource from selected data to answer a driving question.

A Bring Your Own Drinks Data workshop is

  • hands-on training by top experts in linking data​
  • hackathon+training: first real steps to connect resources conform international standards​
  • bringing together
    • Data owners (the trainees)​
    • International Linked Data experts (the trainers)​
    • Domain experts​
    • Mediators
  • preceded by​ 
    • 2 webinars​
    • On line shared documentation​
  • Organised by the RD-Connect Linked Data and Ontology Task Force, BioMedBridges, and DTL/Elixir​
  • Sponsored by RD-Connect and DTL/Elixir​

After the BYOD you ...

  • know how you can make integration ​with your source near effortless​ following FAIR data principles (Findable, Accessible, Interoperable, Reusable)​
  • unreservedly ask questions beyond one source​ without thinking about how to import their data into your system​


Read the Blog of Linked Data expert Alasdair Gray