Evidence map›Paper›PMID 34511509›Full record

GuidelineJournal of neuromuscular diseases2021

Adult North Star Network (ANSN): Consensus Guideline For The Standard Of Care Of Adults With Duchenne Muscular Dystrophy.

R Quinlivan, B Messer, P Murphy, R Astin, R Mukherjee, J Khan, A Emmanuel, S C Wong, R Kulshresha, T Willis and 9 more

Open access · hybridAbstract readGuideline
PubMed Full text at PMC Publisher
In one paragraph

Guideline in Journal of neuromuscular diseases, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 20 papers.

0numbers the graph read from it
0cells of the map it votes in
20citing papers in PubMed
4.7field-weighted citation impact, top 4% 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

20 citing papers in PubMed, 42 citations in OpenAlex.

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  17. An observational study ofERJ open research · 2022
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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

19 authors at 9 institutions in 2 countries.

R QuinlivanMRC Centre for Neuromuscular Disease, UCL Institute of Neurology, National Hospital for Neurology and Neurosurgery, London, UK.
B MesserNewcastle-upon-Tyne Hospitals NHS Foundation Trust, Newcastle, UK.
P MurphyLane Fox Unit, Guy's and St Thomas' Foundation Trust, London, UK.
R AstinMRC Centre for Neuromuscular Disease, UCL Institute of Neurology, National Hospital for Neurology and Neurosurgery, London, UK.
R MukherjeeHeart of England NHS Foundation Trust, Birmingham, UK.
J KhanMRC Centre for Neuromuscular Disease, UCL Institute of Neurology, National Hospital for Neurology and Neurosurgery, London, UK.
A EmmanuelMRC Centre for Neuromuscular Disease, UCL Institute of Neurology, National Hospital for Neurology and Neurosurgery, London, UK.
S C WongUniversity of Glasgow, Royal Hospital for Children, Glasgow, UK.
R KulshreshaRobert Jones and Agnes Hunt Foundation NHS Trust, Oswestry, UK.
T WillisRobert Jones and Agnes Hunt Foundation NHS Trust, Oswestry, UK.
J PattniMRC Centre for Neuromuscular Disease, UCL Institute of Neurology, National Hospital for Neurology and Neurosurgery, London, UK.
D WillisShrewsbury and Telford NHS Trust, Shropshire, UK.
A MorganSouth West Neuromuscular Operational Delivery Network, Bristol, UK.
K SavvatisMRC Centre for Neuromuscular Disease, UCL Institute of Neurology, National Hospital for Neurology and Neurosurgery, London, UK.
R KeenRoyal National Orthopaedic Hospital, Stanmore, UK.
J BourkeNewcastle-upon-Tyne Hospitals NHS Foundation Trust, Newcastle, UK.
C Marini BettoloNewcastle-upon-Tyne Hospitals NHS Foundation Trust, Newcastle, UK.
C HewamaddumaAcademic Neurology Department, Sheffield Teaching Hospitals Foundation Trust and Sheffield Institute for Translational Neurosciences (SITRAN), University of Sheffield, Sheffield, UK.
ANSN
Newcastle upon Tyne Hospitals NHS Foundation Trust · GBGuy's and St Thomas' NHS Foundation Trust · GBHeart of England NHS Foundation Trust · GBNational Hospital for Neurology and Neurosurgery · GBRobert Jones and Agnes Hunt Orthopaedic Hospital · GBRoyal Hospital for Children · GBShrewsbury and Telford Hospital NHS Trust · GBSt Bartholomew's Hospital · GBSheffield Teaching Hospitals NHS Foundation Trust · GB

Funding

British Heart Foundation SP/05/001/18616
6 · The paper itself

Abstract

There are growing numbers of adults with Duchenne Muscular Dystrophy living well into their fourth decade. These patients have complex medical needs that to date have not been addressed in the International standards of care. We sought to create a consensus based standard of care through a series of multi-disciplinary workshops with specialists from a wide range of clinical areas: Neurology, Cardiology, Respiratory Medicine, Gastroenterology, Endocrinology, Palliative Care Medicine, Rehabilitation, Renal, Anaesthetics and Clinical Psychology. Detailed reports of evidence reviewed and the consensus building process were produced following each workshop and condensed into this final document which was approved by all members of the Adult North Star Network including service users. The aim of this document is to provide a framework to improve clinical services and multi-disciplinary care for adults living with Duchenne Muscular Dystrophy.

Indexed as

ConsensusStandard of CareAdultHumansMuscular Dystrophy, DuchenneSurveys and QuestionnairesDuchenne Muscular Dystrophymulti-disciplinary carenon-invasive ventilation

Identifiers

PMID34511509
PMCPMC8673515
OpenAlexW3196769134

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC
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.