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Record W2323920076 · doi:10.1017/cjn.2016.37

Pompe Disease: Diagnosis and Management. Evidence-Based Guidelines from a Canadian Expert Panel

2016· review· en· W2323920076 on OpenAlexaffvenueabout
Mark A. Tarnopolsky, Hans Katzberg, Basil J. Petrof, Sandra Sirrs, Harvey B. Sarnat, Kimberley Myers, Nicolas Dupré, Dubravka Dodig, Angela Genge, Shannon L. Venance, Lawrence Korngut, Julian Raiman

Bibliographic record

VenueCanadian Journal of Neurological Sciences / Journal Canadien des Sciences Neurologiques · 2016
Typereview
Languageen
FieldMedicine
TopicLysosomal Storage Disorders Research
Canadian institutionsHospital for Sick ChildrenLondon Health Sciences CentreUniversité LavalUniversity of British ColumbiaToronto Western HospitalCentre hospitalier universitaire de QuébecAlberta Children's HospitalMontreal Neurological Institute and HospitalMcMaster University Medical CentreUniversity Health NetworkWestern UniversityUniversity of TorontoUniversity of CalgaryMcGill University
Fundersnot available
KeywordsGuidelineMedicineDiseaseEvidence-based medicineIntensive care medicineSystematic reviewCohortDisease managementClinical trialMEDLINEQuality of evidencePediatricsEvidence-based practiceFamily medicinePhysical therapyAlternative medicineMeta-analysisPathology

Abstract

fetched live from OpenAlex

Pompe disease is a lysosomal storage disorder caused by a deficiency of the enzyme acid alpha-glucosidase. Patients have skeletal muscle and respiratory weakness with or without cardiomyopathy. The objective of our review was to systematically evaluate the quality of evidence from the literature to formulate evidence-based guidelines for the diagnosis and management of patients with Pompe disease. The literature review was conducted using published literature, clinical trials, cohort studies and systematic reviews. Cardinal treatment decisions produced seven management guidelines and were assigned a GRADE classification based on the quality of evidence in the published literature. In addition, six recommendations were made based on best clinical practices but with insufficient data to form a guideline. Studying outcomes in rare diseases is challenging due to the small number of patients, but this is in particular the reason why we believe that informed treatment decisions need to consider the quality of the evidence.

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)0.035
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 score0.846
Threshold uncertainty score0.305

Distilled classifier scores by category (both heads)

CategoryCodexGemma
Metaresearch0.0150.035
Meta-epidemiology (narrow)0.0020.001
Meta-epidemiology (broad)0.0040.005
Bibliometrics0.0130.009
Science and technology studies0.0010.001
Scholarly communication0.0030.002
Open science0.0050.002
Research integrity0.0040.003
Insufficient payload (model declined to judge)0.0050.002

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 head0.239
GPT teacher head0.396
Teacher spread0.157 · 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

Citations83
Published2016
Admission routes3
Has abstractyes

Explore more

Same venueCanadian Journal of Neurological Sciences / Journal Canadien des Sciences NeurologiquesSame topicLysosomal Storage Disorders ResearchFrench-language works237,207