Children and families have their say on what outcomes matter >> We want to say a big thank you to the 52 wonderful children and parents who participated in the SONG-Kids focus groups in Vancouver, Calgary and Houston. They shared their goals, challenges, and inspiring stories, and told us what outcomes were important for research. Energy, immunity, worry/anxiety, having to go to hospital, pain, thirst, and growth, were some of the top priorities for children. Next year, we will finish our final round of focus groups in Australia.
Also, the SONG-Kids Steering Group had two face-to-face meetings during the Congress of the International Paediatric Nephrology Association in Iguacu, Brazil; and the American Society of Nephrology Kidney Week in Chicago, United States. In Chicago, the Steering Group were joined by parents as well as representatives from the US Food and Drug Administration (FDA) and the National Institutes of Health (NIH).
The SONG-Kids Delphi Survey is planned to open April 2017. If you are interested and want to have your say on what outcomes are important for children with chronic kidney disease, please register your details here