Evidence map›Paper›PMID 27519274›Full record

ArticleTrials2016

Standardised Outcomes in Nephrology-Children and Adolescents (SONG-Kids): a protocol for establishing a core outcome set for children with chronic kidney disease.

Allison Tong, Susan Samuel, Michael Zappitelli, Allison Dart, Susan Furth, Allison Eddy, Jaap Groothoff, Nicholas J A Webb, Hui-Kim Yap, Detlef Bockenhauer and 17 more

Registry-linked trialAbstract readConsensus Statement
PubMed Full text at PMC Publisher
In one paragraph

Article in Trials, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT07561957 (A Smart Phone Application to Improve Adoption of the 2024 KDIGO CKD Guidelines), which is not on this map. Cited by 23 papers, 4 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
23citing papers in PubMed, 4 pooled it
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

NCT07561957 narecruitingnot on this mapstarted 2026, after this paper: background citation

A Smart Phone Application to Improve Adoption of the 2024 KDIGO CKD Guidelines

TypeinterventionalSponsorSt. James's Hospital, IrelandRan2026 to 2027Enrolled80ConditionsChronic Kidney Disease, Proteinuria, Blood Pressure Control, Congenital Anomalies of the Kidneys and Urinary TractArmsUse of an electronic digital Application
3 · Its place in the literature

Who cites it

23 citing papers in PubMed, 4 syntheses or guidelines pooled it.

  1. Pooled it
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  5. Review
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  7. Treatment burden, healthcare experiences, and health-related quality of life among youth with chronic kidney disease treated for hypertension.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2026
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  15. Review
  16. Monitoring dialysis adequacy: history and current practice.Pediatric nephrology (Berlin, Germany) · 2021
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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

27 authors.

Allison TongSydney School of Public Health, The University of Sydney, Sydney, NSW, Australia. allison.tong@sydney.edu.au.
Susan SamuelDepartment of Pediatrics, Section of Nephrology, University of Calgary, Calgary, AB, Canada.
Michael ZappitelliDepartment of Pediatrics, Division of Pediatric Nephrology, Montreal Children's Hospital, McGill University Health Centre, McGill University, Montreal, QC, Canada.
Allison DartDepartment of Pediatrics and Child Health, The Children's Hospital Research Institute of Manitoba, University of Manitoba, Winnipeg, MB, Canada.
Susan FurthDepartments of Pediatrics and Epidemiology, Perelman School of Medicine and Division of Nephrology, The Children's Hospital of Philadelphia, Philadelphia, PA, USA.
Allison EddyDepartment of Pediatrics, University of British Columbia, Vancouver, BC, Canada.
Jaap GroothoffDepartment of Pediatric Nephrology, Emma Children's Hospital AMC Academic Medical Center, Amsterdam, The Netherlands.
Nicholas J A WebbDepartment of Paediatric Nephrology and NIHR/Wellcome Trust Clinical Research Facility, University of Manchester, Manchester Academic Health Science Centre, Royal Manchester Children's Hospital, Manchester, UK.
Hui-Kim YapDepartment of Pediatrics, Yong Loo Lin School of Medicine, National University of Singapore, Singapore, Singapore.
Detlef BockenhauerUCL Centre for Nephrology and Great Ormond Street Hospital for Children NHS Foundation Trus, London, UK.
Aditi SinhaDivision of Nephrology, Department of Pediatrics, All India Institute of Medical Sciences, New Delhi, India.
Stephen I AlexanderCentre for Kidney Research, The Children's Hospital at Westmead, Westmead, NSW, 2145, Australia.
Stuart L GoldsteinDivision of Nephrology and Hypertension, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA.
Debbie S GipsonDepartment of Pediatrics, School of Medicine, University of Michigan, Ann Arbor, MI, USA.
Camilla S HansonSydney School of Public Health, The University of Sydney, Sydney, NSW, Australia.
Nicole EvangelidisSydney School of Public Health, The University of Sydney, Sydney, NSW, Australia.
Sally CroweCrowe Associates Ltd, London, UK.
Tess HarrisPKD International, London, UK.
Brenda R HemmelgarnDepartments of Medicine and Community Health Sciences, Libin Cardiovascular Institute and O'Brien Institute of Public Health, University of Calgary, Calgary, AB, Canada.
Braden MannsDepartments of Medicine and Community Health Sciences, Libin Cardiovascular Institute and O'Brien Institute of Public Health, University of Calgary, Calgary, AB, Canada.
John GillDivision of Nephrology, University of British Columbia, Vancouver, BC, Canada.
Peter TugwellDepartment of Medicine, University of Ottawa, Ottawa, ON, Canada.
Wim Van BiesenRenal Division, Ghent University Hospital, Ghent, Belgium.
David C WheelerCentre for Nephrology, University College London, London, UK.
Wolfgang C WinkelmayerSelzman Institute for Kidney Health, Section of Nephrology, Baylor College of Medicine, Houston, TX, USA.
Jonathan C CraigSydney School of Public Health, The University of Sydney, Sydney, NSW, Australia.
SONG-Kids Investigators

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundChildren with chronic kidney disease (CKD), requiring dialysis or kidney transplantation, have a mortality rate of up to 30-fold higher than the general aged-matched population, and severely impaired quality of life. Symptoms such as fatigue and pain are prevalent and debilitating. Children with CKD are at risk of cognitive impairment, and poorer educational, vocational, and psychosocial outcomes compared with their well peers, which have consequences through to adulthood. Treatment regimens for children with CKD are long-term, complex, and highly intrusive. While many trials have been conducted to improve outcomes in children with CKD, the outcomes measured and reported are often not relevant to patients and clinicians, and are highly variable. These problems can diminish the value of trials as a means to improve the lives of children with CKD. The Standardised Outcomes in Nephrology-Children and Adolescents (SONG-Kids) study aims to develop a core outcome set for trials in children and adolescents with any stage of CKD that is based on the shared priorities of all stakeholders. METHODS/

designSONG-Kids involves five phases: a systematic review to identify outcomes (both domains and measures) that have been reported in randomised controlled trials involving children aged up to 21 years with CKD; focus groups (using nominal group technique) with adolescent patients and caregivers of paediatric patients (all ages) to identify outcomes that are relevant and important to patients and their family and the reasons for their choices; semistructured key informant interviews with health professionals involved in the care of children with CKD to ascertain their views on establishing core outcomes in paediatric nephrology; an international three-round online Delphi survey with patients, caregivers, clinicians, researchers, policy-makers, and members from industry to develop consensus on important outcome domains; and a stakeholder workshop to review and finalise the set of core outcome domains for trials in children with CKD (including nondialysis-dependent, dialysis, and kidney transplantation). DISCUSSION: Establishing a core outcome set to be reported in all trials conducted in children with any stage of CKD will enhance the relevance, transparency, and impact of research to improve the lives of children and adolescents with CKD.

Indexed as

Kidney TransplantationPatient Outcome AssessmentRenal DialysisAdolescentAge FactorsChildConsensusCooperative BehaviorDelphi TechniqueEndpoint DeterminationFemaleFocus GroupsHealth StatusHumansInterdisciplinary CommunicationInterviews as TopicChronic kidney diseaseClinical trialsCore outcome setDialysisHaemodialysisOutcomes researchPaediatricsPatient-centred outcomes

Identifiers

PMID27519274
PMCPMC4982996

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Registered trials

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.