SONG-Kids
Research type
Research Study
Full title
Important outcomes for children with chronic kidney disease and their caregivers; Delphi Survey.
IRAS ID
249197
Contact name
Allison Tong
Contact email
Sponsor organisation
The University of Sydney
Duration of Study in the UK
1 years, 0 months, 3 days
Research summary
The SONG-Kids Delphi Survey aims to generate a prioritised list of core outcomes to be included in research for children with kidney disease, aiming to reach agreement between stakeholder groups.
Children aged 8 to 21 years old with any stage of CKD or treatment, and parents/caregivers of children with CKD are eligible to participate in the surveys. Therefore, children on dialysis, transplant or no form of renal replacement therapy can participate.
We will aim to recruit a minimum 150 patients and 150 parents to complete the online survey.
There will be three rounds of surveys. Each survey will be approximately two weeks apart, and take about 10 minutes to complete. Patients will complete a child version of the survey, and will have their parents present. Parents can also participate separately.
The first round of the survey will include a brief demographic questionnaire. In each round, participants will rate a list of outcomes in terms of their importance. Participants can also provide comments to explain their rating.
After the first round, the scores will be collated and outcomes with the lowest rating will be excluded from round 2.
The process will be repeated for round 3. For the second and third round, participants will be shown their previous score, and a summary of group responses from the previous round to consider when re-rating the outcomes.
At the end of the third round, participants will be provided with another short survey, where they are asked to choose their most and least important outcome from a list of outcomes.
The study is being conducted by The University of Sydney, we will simply be asking our patients if they would like to take part in the survey and contribute to the survey. The University of Sydney will remain custodians of the data.REC name
North East - York Research Ethics Committee
REC reference
18/NE/0263
Date of REC Opinion
16 Aug 2018
REC opinion
Favourable Opinion