The primary aims/purposes of ROKD (QUALITY) are to:
• Collect epidemiologically sound and consistent data across Australia to:
o increase the accuracy of estimates of specific renal disease incidence and prevalence
o increase the accuracy of estimates of chronic kidney disease incidence and prevalence
o improve understanding of the phenotypic expression and natural history of disease
o identify factors that predict prognosis and outcomes, particularly in relation to progression to end stage kidney disease (dialysis/transplantation), cardiovascular events or death
o assess current patterns of care and clinical practice
o improve evidence for best practice-based guidelines for patient management
o reduce variation in treatment and improve outcomes as a result of better implementation of evidence-based guidelines
• Facilitate awareness and promotion of clinical trials nationally, and potentially facilitate identification and recruitment of eligible volunteers to relevant clinical trials
• Enable research by providing aggregate, de-identified data to research entities.
• Promulgate new knowledge to inform best practice and care services.
The aims/purposes of the ROKD (RARE KIDNEY DISEASES) are to:
o provide a platform for a scarce pool for promoting improved clinical and patient outcomes in specific rarer renal diseases
o assess the feasibility of and the facilitation of clinical trials to evaluate new interventions in rarer kidney diseases.