The SONG Initiative is led by an international 13-member Executive Committee who work in close collaboration with the Steering Groups, Expert Working Groups, Investigators and organisations worldwide.
The Steering Groups are convened to develop core outcome domains within each of the streams of SONG – currently SONG-HD, SONG-Tx, SONG-Kids, SONG-PD, and SONG-PKD.
The Expert Working Groups are responsible for establishing core outcome measures for each core outcome domain established within each stream of the SONG Initiative. Working Groups have been convened for:
The SONG Coordinating Committee provides input on projects across all streams of SONG, and contribute to methodological developments. Some members are responsible for coordinating specific SONG streams or projects in consultation with the respective Steering Group or Expert Working Group.
Investigators are involved in various aspects of the project and contribute to the concept and design of the work, data collection and analysis; and help to facilitate participant recruitment.
Collaborating organisations help to reach out to patients with chronic kidney disease, families, caregivers, doctors, nurses, allied health professionals, researchers and policy makers.