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Record W4390063576 · doi:10.1016/j.jcf.2023.12.002

Standards for the care of people with cystic fibrosis; establishing and maintaining health

2023· review· en· W4390063576 on OpenAlexaff
Kevin W Southern, C. Addy, Scott C. Bell, Amanda Bevan, Urzula Borawska, Catherine Brown, Pierre‐Régis Burgel, Brenda Button, Carlo Castellani, A. Chansard, Mark Chilvers, Gwyneth Davies, Jane C. Davies, K. De Boeck, Dimitri Declercq, Michael Doumit, Pavel Dřevı́nek, Isabelle Fajac, Silvia Gärtner, Anna M. Georgiopoulos, Sandra Gursli, Andrea Gramegna, C. Hansen, Martin J. Hug, Elise Lammertyn, Edwina C. Landau, Ross Langley, Nicole Mayer-Hamblett, Anna Middleton, Peter G. Middleton, M. Mielus, Lisa Morrison, À. Munck, Barry J. Plant, M. Ploeger, Dominique Bertrand, Tacjana Pressler, Bradley S. Quon, Thomas Radtke, Zoe L. Saynor, Ilan Shufer, Alan R Smyth, Chris Smith, Silke van Koningsbruggen‐Rietschel

Bibliographic record

VenueJournal of Cystic Fibrosis · 2023
Typereview
Languageen
FieldMedicine
TopicCystic Fibrosis Research Advances
Canadian institutionsSt. Paul's HospitalUniversity of British ColumbiaBC Children's Hospital
FundersUniversity of LiverpoolNational Institute for Health and Care Research
KeywordsMedicineCystic fibrosisCystic fibrosis transmembrane conductance regulatorDirectiveIvacaftorHealth careAdverse effectIntensive care medicinePharmacologyInternal medicine

Abstract

fetched live from OpenAlex

This is the second in a series of four papers updating the European Cystic Fibrosis Society (ECFS) standards for the care of people with CF. This paper focuses on establishing and maintaining health. The guidance is produced using an evidence-based framework and with wide stakeholder engagement, including people from the CF community. Authors provided a narrative description of their topic and statements, which were more directive. These statements were reviewed by a Delphi exercise, achieving good levels of agreement from a wide group for all statements. This guidance reinforces the importance of a multi-disciplinary CF team, but also describes developing models of care including virtual consultations. The framework for health is reinforced, including the need for a physically active lifestyle and the strict avoidance of all recreational inhalations, including e-cigarettes. Progress with cystic fibrosis transmembrane conductance regulator (CFTR) modulator therapy is reviewed, including emerging adverse events and advice for dose reduction and interruption. This paper contains guidance that is pertinent to all people with CF regardless of age and eligibility for and access to modulator therapy.

Fetched live from OpenAlex and de-inverted. Abstracts are not stored in this database: the inverted indexes are 8.6 GB of the frame’s 9.3 GB of text, and the host has 13 GB free.

How this classification was reachedexpand

Full frame machine prediction

Teacher imitation

Not calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.

metaresearch head score (Codex)0.015
metaresearch head score (Gemma)0.023
Version: metacan-v3-hybrid-931329e0061cValidation status: machine_predicted_unvalidated
Candidate categoriesnone
Consensus categoriesnone
DomainCandidate signal: none · Consensus signal: none
Study designCandidate signal: Not applicable · Consensus signal: none
GenreCandidate signal: Review · Consensus signal: Review
Teacher disagreement score0.015
Threshold uncertainty score0.081

Distilled classifier scores by category (both heads)

CategoryCodexGemma
Metaresearch0.0150.023
Meta-epidemiology (narrow)0.0010.000
Meta-epidemiology (broad)0.0020.002
Bibliometrics0.0040.003
Science and technology studies0.0010.001
Scholarly communication0.0030.003
Open science0.0030.003
Research integrity0.0040.005
Insufficient payload (model declined to judge)0.0040.002

Machine scores (provisional)

The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.

Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.

Opus teacher head0.035
GPT teacher head0.383
Teacher spread0.348 · how far apart the two teachers sit on this one work
Validation statusscore_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from it

Classification

machine, unvalidated

Machine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.

The models applied no category: nothing in the taxonomy fit this work.
Study designNot applicable
Domainnot available
GenreReview

How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".

Quick stats

Citations81
Published2023
Admission routes1
Has abstractyes

Explore more

Same venueJournal of Cystic FibrosisSame topicCystic Fibrosis Research AdvancesFrench-language works237,207