Evidence map›Paper›PMID 31044288›Full record

ArticlePediatric nephrology (Berlin, Germany)2020

The importance of clinician, patient and researcher collaborations in Alport syndrome.

Michelle N Rheault, Judith Savige, Michael J Randles, André Weinstock, Melissa Stepney, A Neil Turner, Gina Parziale, Oliver Gross, Frances A Flinter, Jeffrey H Miner and 3 more

Open access · hybridAbstract read
In one paragraph

Article in Pediatric nephrology (Berlin, Germany), 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 12 papers.

0numbers the graph read from it
0cells of the map it votes in
12citing papers in PubMed
1.4field-weighted citation impact, top 19% 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

12 citing papers in PubMed, 26 citations in OpenAlex.

  1. Review
  2. Article
  3. Observational
  4. Article
  5. Genetic diagnosis of Alport syndrome in 16 Chinese families.Molecular genetics & genomic medicine · 2024
    Article
  6. Review
  7. Review
  8. Article
  9. Combination of a Novel Genetic Variant inFrontiers in genetics · 2021
    Article
  10. Article
  11. Article
  12. Novel Digenic Variants inCase reports in nephrology and dialysis
    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

13 authors at 10 institutions in 3 countries.

Michelle N RheaultDepartment of Pediatrics, University of Minnesota Masonic Children's Hospital, Minneapolis, MN, USA.
Judith SavigeDepartment of Medicine, Royal Melbourne Hospital, Victoria, Australia.
Michael J RandlesWellcome Centre for Cell-Matrix Research, Division of Cell Matrix Biology and Regenerative Medicine, School of Biological Sciences, Faculty of Biology Medicine and Health, University of Manchester, Manchester, UK.
André WeinstockAlport Syndrome Foundation, Phoenix, AZ, USA.
Melissa StepneyNuffield Department of Primary Care Health Sciences, University of Oxford, Oxford, UK.
A Neil TurnerRenal Medicine, Royal Infirmary, University of Edinburgh, Edinburgh, UK.
Gina ParzialeAlport Syndrome Foundation, Phoenix, AZ, USA.
Oliver GrossClinic of Nephrology and Rheumatology, University Medicine Goettingen, Goettingen, Germany.
Frances A FlinterDepartment of Clinical Genetics, Guy's & St Thomas' NHS Foundation Trust, London, UK.
Jeffrey H MinerDivision of Nephrology, Washington University School of Medicine, St Louis, MO, USA.
Sharon LagasAlport Syndrome Foundation, Phoenix, AZ, USA.
Susie GearAlport UK, Tetbury, UK.
Rachel LennonWellcome Centre for Cell-Matrix Research, Division of Cell Matrix Biology and Regenerative Medicine, School of Biological Sciences, Faculty of Biology Medicine and Health, University of Manchester, Manchester, UK. Rachel.Lennon@manchester.ac.uk.ORCID 0000-0001-6400-0227
Alport Syndrome Foundation · USEdinburgh Royal Infirmary · GBGuy's and St Thomas' NHS Foundation Trust · GBManchester Academic Health Science Centre · GBTetbury Hospital · GBThe Royal Melbourne Hospital · AUUniversity of Minnesota Children's Hospital · USUniversity of Oxford · GBWashington University in St. Louis · USWellcome Centre for Cell-Matrix Research · GB

Funding

Wellcome TrustWellcome Trust 202860/Z/16/ZWellcome Trust 203128/Z/16/Z
6 · The paper itself

Abstract

Alport syndrome is caused by mutations in the genes COL4A3, COL4A4 or COL4A5 and is characterised by progressive glomerular disease, sensorineural hearing loss and ocular defects. Occurring in less than 1:5000, Alport syndrome is a rare genetic disorder but still accounts for > 1% of the prevalent population receiving renal replacement therapy. There is also increasing awareness about the risk of chronic kidney disease in individuals with heterozygous mutations in Alport syndrome genes. The mainstay of current therapy is the use of angiotensin-converting enzyme inhibitors and angiotensin receptor blockers, yet potential new therapies are now entering clinical trials. The 2017 International Workshop on Alport Syndrome in Glasgow was a pre-conference workshop ahead of the 50th anniversary meeting of the European Society for Pediatric Nephrology. It focussed on updates in clinical practice, genetics and basic science and also incorporated patient perspectives. More than 80 international experts including clinicians, geneticists, researchers from academia and industry, and patient representatives took part in panel discussions and breakout groups. This report summarises the workshop proceedings and the relevant contemporary literature. It highlights the unique clinician, patient and researcher collaborations achieved by regular engagement between the groups.

Indexed as

Intersectoral CollaborationPatient ParticipationAngiotensin-Converting Enzyme InhibitorsAutoantigensBiomedical ResearchChildClinical Trials as TopicCollagen Type IVCongresses as TopicHumansMutationNephritis, HereditaryNephrologyPediatricsPractice Guidelines as TopicRare DiseasesAngiotensin-Converting Enzyme InhibitorsAutoantigensCOL4A4 protein, humanCOL4A5 protein, humanCollagen Type IVtype IV collagen alpha3 chainAlport syndromeBasement membraneCOL4A3COL4A4COL4A5Type IV collagen

Identifiers

PMID31044288
PMCPMC7096363
OpenAlexW2942808739

What OpenQuestion holds

Textmetadata
LicenceCC BY
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.