Evidence map›Paper›PMID 31118499›Full record

GuidelineNature reviews. Nephrology2019

International consensus statement on the diagnosis and management of autosomal dominant polycystic kidney disease in children and young people.

Charlotte Gimpel, Carsten Bergmann, Detlef Bockenhauer, Luc Breysem, Melissa A Cadnapaphornchai, Metin Cetiner, Jan Dudley, Francesco Emma, Martin Konrad, Tess Harris and 14 more

Open access · hybridAbstract readConsensus StatementPractice Guideline
In one paragraph

Guideline in Nature reviews. Nephrology, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 80 papers, 2 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
80citing papers in PubMed, 2 pooled it
11.5field-weighted citation impact, top 1% of its field
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

80 citing papers in PubMed, 2 syntheses or guidelines pooled it, 160 citations in OpenAlex.

  1. Pooled it
  2. Guideline
  3. Trial
  4. Trial
  5. Article
  6. Review
  7. Article
  8. Article
  9. Monogenic Etiologies of Kidney Cysts in the Pediatric Population: An Observational Cohort Study.Clinical journal of the American Society of Nephrology : CJASN · 2026
    Observational
  10. Review
  11. Article
  12. Review
  13. Review
  14. Article
  15. Structured Application of Genetic Testing in a Pediatric Kidney Clinic.Journal of the American Society of Nephrology : JASN · 2026
    Article
  16. Review
  17. Article
  18. Article
  19. Article
  20. Polycystic Kidney Disease in Children: The Current Status and the Next Horizon.American journal of kidney diseases : the official journal of the National Kidney Foundation · 2025
    Review

20 more citing papers are in PubMed but not listed here.

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

24 authors at 17 institutions in 6 countries.

Charlotte GimpelDivision of Pediatric Nephrology, Department of General Pediatrics, Adolescent Medicine and Neonatology, Center for Pediatrics, Medical Center-University of Freiburg, Faculty of Medicine, Freiburg, Germany. charlotte.gimpel@uniklinik-freiburg.de.ORCID http://orcid.org/0000-0003-1296-9081
Carsten BergmannDepartment of Medicine IV, Medical Center-University of Freiburg, Faculty of Medicine, University of Freiburg, Freiburg, Germany.
Detlef BockenhauerUniversity College London, Great Ormond Street Hospital, Institute of Child Health, London, UK.ORCID http://orcid.org/0000-0001-5878-941X
Luc BreysemDepartment of Pediatric Radiology, University Hospital of Leuven, Leuven, Belgium.
Melissa A CadnapaphornchaiRocky Mountain Pediatric Kidney Center, Rocky Mountain Hospital for Children at Presbyterian St Luke's Medical Center, Denver, CO, USA.
Metin CetinerDepartment of Pediatrics II, University Hospital Essen, Essen, Germany.
Jan DudleyRenal Department, Bristol Royal Hospital for Children, Bristol, UK.
Francesco EmmaDivision of Nephrology and Dialysis, Ospedale Pediatrico Bambino Gesù-IRCCS, Rome, Italy.
Martin KonradDepartment of General Pediatrics, University Children's Hospital, Münster, Germany.
Tess HarrisPKD International, Geneva, Switzerland.
Peter C HarrisDivision of Nephrology and Hypertension, Mayo Clinic, Rochester, MN, USA.
Jens KönigDepartment of General Pediatrics, University Children's Hospital, Münster, Germany.
Max C LiebauDepartment of Pediatrics and Center for Molecular Medicine Cologne, University of Cologne, Faculty of Medicine and University Hospital Cologne, Cologne, Germany.ORCID http://orcid.org/0000-0003-0494-9080
Matko MarlaisUniversity College London, Great Ormond Street Hospital, Institute of Child Health, London, UK.
Djalila MekahliDepartment of Pediatric Nephrology, University Hospital of Leuven, Leuven, Belgium.
Alison M MetcalfeFaculty of Health and Wellbeing, Sheffield Hallam University, Sheffield, UK.
Jun OhDepartment of Pediatrics, University Medical Center Hamburg-Eppendorf, Hamburg, Germany.
Ronald D PerroneDivision of Nephrology, Department of Medicine, Tufts Medical Center, Boston, MA, USA.
Manish D SinhaKings College London, Department of Paediatric Nephrology, Evelina London Children's Hospital, London, UK.
Andrea TitieniDepartment of General Pediatrics, University Children's Hospital, Münster, Germany.
Roser TorraDepartment of Nephrology, University of Barcelona, Barcelona, Spain.
Stefanie WeberDepartment of Pediatrics, University of Marburg, Marburg, Germany.
Paul J D WinyardUniversity College London, Great Ormond Street Hospital, Institute of Child Health, London, UK.
Franz SchaeferDivision of Pediatric Nephrology, Center for Pediatrics and Adolescent Medicine, University Hospital, Heidelberg, Germany.
Great Ormond Street Hospital · GBUniversity Hospital Münster · DEKU Leuven · BEUniversity of Freiburg · DEBambino Gesù Children's Hospital · ITBristol Royal Hospital for Children · GBEssen University Hospital · DEHeidelberg University · DEKing's College London · GBMayo Clinic · USPhilipps University of Marburg · DERocky Mountain Hospital for Children · USSheffield Hallam University · GBTufts Medical Center · USUniversitat de Barcelona · ESUniversität Hamburg · DEUniversity of Cologne · DE

Funding

Pilot and FeasibilityP30DK090728 · NIDDK · MAYO CLINIC ROCHESTER · PI TORRES, VICENTE E · 2010 to 2019
$11.8M
ADPKD:Disease Spectrum &Genotype-Phenotype CorrelationsR01DK058816 · NIDDK · MAYO CLINIC ROCHESTER · PI Peter C. Harris · 2001 to 2026
$11.3M
NIDDK NIH HHS P30 DK090728NIDDK NIH HHS R01 DK058816
6 · The paper itself

Abstract

These recommendations were systematically developed on behalf of the Network for Early Onset Cystic Kidney Disease (NEOCYST) by an international group of experts in autosomal dominant polycystic kidney disease (ADPKD) from paediatric and adult nephrology, human genetics, paediatric radiology and ethics specialties together with patient representatives. They have been endorsed by the International Pediatric Nephrology Association (IPNA) and the European Society of Paediatric Nephrology (ESPN). For asymptomatic minors at risk of ADPKD, ongoing surveillance (repeated screening for treatable disease manifestations without diagnostic testing) or immediate diagnostic screening are equally valid clinical approaches. Ultrasonography is the current radiological method of choice for screening. Sonographic detection of one or more cysts in an at-risk child is highly suggestive of ADPKD, but a negative scan cannot rule out ADPKD in childhood. Genetic testing is recommended for infants with very-early-onset symptomatic disease and for children with a negative family history and progressive disease. Children with a positive family history and either confirmed or unknown disease status should be monitored for hypertension (preferably by ambulatory blood pressure monitoring) and albuminuria. Currently, vasopressin antagonists should not be offered routinely but off-label use can be considered in selected children. No consensus was reached on the use of statins, but mTOR inhibitors and somatostatin analogues are not recommended. Children with ADPKD should be strongly encouraged to achieve the low dietary salt intake that is recommended for all children.

Indexed as

AdolescentChildCombined Modality TherapyDirective CounselingHumansMass ScreeningPolycystic Kidney, Autosomal DominantReferral and ConsultationRisk Assessment

Identifiers

PMID31118499
PMCPMC7136168
OpenAlexW2945797083

What OpenQuestion holds

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LicenceCC BY
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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.