Workshop Presentation on the Orphanet Nomenclature
Key Resources for ERN Stakeholders:
| ‘Standard procedure and guide for the coding with Orphacodes‘ | Expert Resource: “Standard procedure and guide for the coding with Orphacodes” (Deliverable of RD-ACTION WP5, led by DIMDI) |
| Letter of invitation-Orphanet | Formal letter sent to all ERNs in June 2017, inviting collaboration with Orphanet |
| User_Guide_Curation_Platform | A How-To Guide to help ERNs and rare disease experts to engage with the new Orphanet Knowledge Management System, to improve the database for any given disease/group of disease |
| Register Your Activity Orphanet | Suggestions of information for ERNs to collect from their HCPs, data which can then be represented via the Orphanet database of Resources |
| Orphanet useful_links | A full list of important Orphanet links |
Why participate to the new Orphanet Curation Platform?
- The dedicated site for the new Orphanet Curation Platform (aka the Knowledge Management Platform) is https://curation.orphanet.org
- Presentation from the RD-ACTION Workshop (25th and 26th April 2017): Orphanet Knowledge Management System
- The Orphanet curation platform (OCP) is a community-driven knowledge curation platform for rare disorders based on Orphanet scientific content
- It allows users (the wider expert community) to propose corrections or modifications for each entry and to meet virtually.
- Changes validated in the OCP will be incorporated to the Orphanet database and ultimately to the Orphanet Rare Disease Ontology (ORDO).
- The OCP creates an interactive knowledge curation process that enables input of new knowledge in Orphanet by ‘expert-crowd sourcing’, significantly reducing the resource intense curation processes while maintaining curatorial control over the high quality of the Orphanet data.
- Interested in contributing? Read the Dedicated Guidance Document – User_Guide_Curation_Platform
Orphanet Procedural Documents
The full range of Procedural Documents is available here – these include the following, and much more:
- Tutorials on the Orphanet Database
- Linearisation rules for Orphanet Classification
- Procedural Document on the naming of rare diseases in Orphanet
- Orphanet Standard Operating Procedures