Data Sharing Policy

The Solve-RD Data Sharing Policy has been updated and is now publicly available. Solve-RD aims to make data FAIR - Findable, Accessible, Interoperable and Re-usable. The most important points of the Solve‐RD Data Sharing Policy:

• All exome/genome sequencing data as well as phenotypic data from unsolved patients will be submitted to the RD‐Connect Genome‐Phenome Analysis Platform (GPAP)
• All IT systems used in Solve‐RD comply with the General Data Protection Regulation, GDPR (Regulation (EU) 2016/679)
• Options for uploading datasets include single dataset upload and bulk upload
• Specific data access stipulations for Solve‐RD in GPAP:
  • All data submitters will be able to see which other users have accessed their submitted datasets and when
  • If justified Solve‐RD data submitters can define longer embargo periods before data become accessible to other users.