European Rare Blood Disorders Platform (ENROL)

The DAC has the overall aim to promote the re-use of the data collected in ENROL while ensuring protection of data subjects. DAC is formed by:

• ENROL Steering Committee
• Legal and ethical experts
• Subgroups for domain disease experts

To promote data sharing and to motivate Provider of data, DAC should encourage secondary uses that are consistent with the ENROL Policy and aims through a transparent and clear procedure for data access. The DAC has the following responsibilities: 

• To approve ENROL's Data Access Policy
• To ensure the good use of assets:
  • Check that the applicant and proposed work complies with the ENROL Policy and requirements in confidentiality
  • Provide feedback to applicants advising on the improvements required for their requests if needed
  • Approve application forms from users of data
  • Approve aggregated figures to be publicly published by ENROL