The Standardized Outcomes in Nephrology (SONG) initiative: a decade of harmonizing patient voices and research in kidney disease

The burden of chronic kidney disease (CKD) is increasing and remains a leading contributor to mortality and morbidity worldwide.1 Patients with CKD can experience debilitating symptoms, including fatigue and pain, as well as treatment adverse effects and clinical complications, such as cardiovascular events. In response, there have been substantial research efforts to improve outcomes in CKD, with ≈15,000 trials published in nephrology in the past few decades

However, progress in nephrology research has been hindered by the variability and limited relevance of outcomes reported in clinical trials, which often focus on biochemical or surrogate end points. Many trials do not include outcomes meaningful to patients and caregivers, such as mortality, cardiovascular disease, and fatigue. These critical outcomes are reported in <20% of hemodialysis trials, and patient-reported outcomes reflecting fatigue, life participation, and pain are frequently absent.2

In an endeavor to ensure the consistent reporting of patient-important outcomes in nephrology trials, the global Standardized Outcomes in Nephrology (SONG) initiative was launched in 2014 to establish core outcomes across all treatment stages of CKD.1 Core outcomes are defined as an agreed standardized set of outcomes that should be reported, as a minimum, in all clinical trials, as they are critically important in decision-making, irrespective of whether they are expected to change because of an intervention.3 A decade on since the inception of the SONG initiative, this article will provide an overview of the SONG initiative methodology, present the core outcome sets that have been established, provide the status of the core outcome measures, discuss the implementation and impact of SONG, and outline future directions.