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Record W4391476496 · doi:10.1136/bmjno-2022-anzan.61

2251 MGBase: ready, set, go! The launch of an international electronic database for patients with Myasthenia Gravis

2022· article· en· W4391476496 on OpenAlex
Katherine Buzzard, Anneke van der Walt, Helmut Butzkueven, Carolina Barnett Tapia, Blake Colman, Wen Wen Zhang

Why this work is in the frame

A frame that forgets how it found something cannot be audited. These are the routes that admitted this work.

affAt least one author lists a Canadian institution in the pinned OpenAlex snapshot.

Bibliographic record

VenueAbstracts · 2022
Typearticle
Languageen
FieldMedicine
TopicMyasthenia Gravis and Thymoma
Canadian institutionsUniversity of TorontoUniversity Health Network
Fundersnot available
KeywordsMilestoneExacerbationObservational studyMedicineMyasthenia gravisFamily medicinePediatricsInternal medicineGeography

Abstract

fetched live from OpenAlex

<h3>Objectives</h3> To develop and implement the first international observational database for patients with Myasthenia Gravis (MG) to advance collaborative outcome-based MG research and improve the quality of care for patients with MG. <h3>Methods</h3> The MGBase was developed based on the highly successful Multiple Sclerosis registry, MSBase. This approach leverages the existing IT infrastructure and governance structures of the MSBase registry. Designed to be used during regular outpatient consultations, MGBase provides a longitudinal graphical display of the patient disease course, therapies and outcomes.The development of the MGBase data entry fields and minimum data set was guided by an MG special interest group comprising national and international MG experts. Members of this group have subsequently formed the MGBase scientific leadership group responsible for determining the overall direction and scope of the MGBase registry. <h3>Results</h3> MGBase was launched in December 2021 with the first patients recruited at two Melbourne tertiary centers. It is anticipated that another four national centers and several international centers will start recruiting patients within the next 6 months. Data from the first 21 patients enrolled in MGBase demonstrates a mean age of 60.1 years (62% female) with mean disease duration of 4.74 years. Five patients had a recorded exacerbation in the last 12 months. Further clinical and demographic data will be presented <h3>Conclusion</h3> MGBase is the first observation international registry launched for patients with MG. The MGBase registry is dedicated to evaluating outcomes data in MG through collaborative international research.

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.

Full frame distilled prediction

Teacher imitation

Not calibrated prevalence, not ground truth. Human validation pending. Learned from the 10,348 direct Codex labels and 10,348 direct Gemma labels. Candidate is the union of thresholded teacher heads; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels or direct frontier model labels.

metaresearch head score (Codex)0.000
metaresearch head score (Gemma)0.000
Version: codex-gemma-dda1882f352aValidation status: machine_predicted_unvalidated
Candidate categoriesnone
Consensus categoriesnone
DomainCandidate signal: none · Consensus signal: none
Study designCandidate signal: Observational · Consensus signal: Observational
GenreCandidate signal: Empirical · Consensus signal: Empirical
Teacher disagreement score0.352
Threshold uncertainty score0.450

Codex and Gemma teacher scores by category

CategoryCodexGemma
Metaresearch0.0000.000
Meta-epidemiology (narrow)0.0000.000
Meta-epidemiology (broad)0.0000.000
Bibliometrics0.0000.000
Science and technology studies0.0000.000
Scholarly communication0.0000.000
Open science0.0000.000
Research integrity0.0000.000
Insufficient payload (model declined to judge)0.0000.000

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 head0.013
GPT teacher head0.271
Teacher spread0.259 · 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