Evidence map›Paper›PMID 41087595›Full record

ArticlePediatric nephrology (Berlin, Germany)2026

Establishing core outcomes and minimal clinically important differences for childhood steroid sensitive nephrotic syndrome clinical trials: results from a Delphi consensus process.

Cal H Robinson, Simon Carter, Nowrin Aman, Valentina Bruno, Shelby Chan, Brian Cuthbertson, Mackenzie Garner, Eddy Fan, Christoph Licht, Ashlene M McKay and 6 more

Abstract read
PubMed Publisher
In one paragraph

Article in Pediatric nephrology (Berlin, Germany), 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing papers in PubMed
–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.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

1 citing paper in PubMed.

  1. Article
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

16 authors.

Cal H RobinsonDivision of Nephrology, The Hospital for Sick Children, Toronto, ON, Canada. cal.robinson@sickkids.ca.
Simon CarterDivision of Nephrology, Department of Pediatrics, The University of Melbourne, Melbourne, VIC, Australia.
Nowrin AmanChild Health Evaluative Sciences, Research Institute, The Hospital for Sick Children, Toronto, ON, Canada.
Valentina BrunoDivision of Nephrology, The Hospital for Sick Children, Toronto, ON, Canada.
Shelby ChanChild Health Evaluative Sciences, Research Institute, The Hospital for Sick Children, Toronto, ON, Canada.
Brian CuthbertsonInterdepartmental Division of Critical Care Medicine, The University of Toronto, Toronto, ON, Canada.
Mackenzie GarnerChild Health Evaluative Sciences, Research Institute, The Hospital for Sick Children, Toronto, ON, Canada.
Eddy FanInterdepartmental Division of Critical Care Medicine, The University of Toronto, Toronto, ON, Canada.
Christoph LichtDivision of Nephrology, The Hospital for Sick Children, Toronto, ON, Canada.
Ashlene M McKayDivision of Nephrology, The Hospital for Sick Children, Toronto, ON, Canada.
Seetha RadhakrishnanDivision of Nephrology, The Hospital for Sick Children, Toronto, ON, Canada.
Veronique RowleyChild Health Evaluative Sciences, Research Institute, The Hospital for Sick Children, Toronto, ON, Canada.
Chia Wei TeohDivision of Nephrology, The Hospital for Sick Children, Toronto, ON, Canada.
Jovanka Z Vasilevska-RistovskaChild Health Evaluative Sciences, Research Institute, The Hospital for Sick Children, Toronto, ON, Canada.
Anna HeathChild Health Evaluative Sciences, Research Institute, The Hospital for Sick Children, Toronto, ON, Canada.
Rulan S ParekhDivision of Nephrology, The Hospital for Sick Children, Toronto, ON, Canada.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundFew randomized controlled trials are conducted in childhood nephrotic syndrome, and substantial global practice variation exists. Trials have not reported consistent outcomes, patient-reported outcomes, or justified minimal clinically important differences (MCID). Our aim was to establish consensus on core outcomes, assessment timepoints, MCIDs, and desirability of outcome ranking (DOOR) endpoints for future childhood steroid-sensitive nephrotic syndrome research.

methodsWe conducted a two-stage Delphi consensus survey of international healthcare providers and Canadian patients and caregivers with experience in childhood nephrotic syndrome. Respondents rated potential outcomes using Likert scales and assigned MCID values for relapse and remission endpoints. Following the surveys, we held workshops for healthcare providers and patients/caregivers in Toronto, Canada, with facilitated discussions. Qualitative data was analyzed thematically to explore perspectives on childhood nephrotic syndrome clinical trial outcomes and MCIDs.

resultsEighty-one participants (45 providers, 36 patients/caregivers, 63% Canadian) responded to the surveys. Three disease outcomes (relapse rate, relapse-free survival, and relapse occurrence) met consensus criteria as core outcomes. Median MCID values were a 25% absolute difference between two treatments in relapse risk by 1-year (for relapse prevention) choices and 10% absolute difference in remission by 2 weeks (for relapse treatment). Consensus was achieved for five core patient-reported outcomes (pain, physical symptoms, physical function and mobility, life participation, and social function) and DOOR endpoints for nephrotic syndrome relapse and remission.

conclusionsConsensus exists among surveyed participants on core disease and patient-reported outcomes for childhood nephrotic syndrome research. Findings can improve the quality and reporting of future trials in this population.

Indexed as

Nephrotic SyndromeRandomized Controlled Trials as TopicAdolescentCanadaChildChild, PreschoolConsensusDelphi TechniqueFemaleHumansMalePatient Reported Outcome MeasuresRecurrenceRemission InductionSecondary PreventionTreatment OutcomeChildCore outcomesDesirability of outcome rankingMinimal clinically important differenceNephrotic syndrome

Identifiers

PMID41087595

What OpenQuestion holds

Textmetadata
Read underepoch 390

Registered trials

None linked

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.