Governance and Ethics

The Registry of Kidney Diesases (ROKD) Steering Committee is responsible for maintaining the confidence of all parties, providing oversight of the registry’s activities including ensuring data quality is monitored and that policies are established to address issues of clinical interest or significance that may arise, including those relating to quality of care. It is intended that the Steering Committee will meet at least twice per year. The Terms of Reference of the Committee include:

  • Monitor the scientific progress of the project including the data quality
  • Advise on the collection and interpretation of data
  • Assess and provide advice regarding performance outliers
  • Advise on scientific priorities to be addressed in data analysis and publication strategy
  • Review publications of the project and provide advice on their scientific quality

Ethical approval for participation in the Registry has been or will be gained from all participating institutional Human Research Ethics (HREC) and related Governance Committees.