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Record W2134825292 · doi:10.4000/quaderni.262

Orphan Drugs, Patient Activism and Contemporary Healthcare

2009· article· en· W2134825292 on OpenAlex
Carlos Novas

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

VenueQuaderni · 2009
Typearticle
Languageen
FieldEconomics, Econometrics and Finance
TopicPharmaceutical Economics and Policy
Canadian institutionsCarleton University
Fundersnot available
KeywordsHumanitiesPolitical scienceOrphan drugPhilosophy

Abstract

fetched live from OpenAlex

Cette contribution analyse les formes de militantisme politique et scientifique qui ont émergé autour des médicaments orphelins depuis la fin des années 70 jusqu’à aujourd’hui. Plus particulièrement, cet article présente le rôle de différents groupes de patients qui ont favorisé le passage de l’American Orphan Drug Act. Ensuite, il discute dans quelle mesure la législation a encouragé l’industrie pharmaceutique et biotechnologique à développer des traitements pour les maladies rares. Enfin, il analyse quelques unes des questions biopolitiques contemporaines posées par les drogues orphelines, notamment le problème du coût élevé de ces formes de thérapies qui limite l’accès du patient aux drogues orphelines.

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: Theoretical or conceptual · Consensus signal: none
GenreCandidate signal: Empirical · Consensus signal: Empirical
Teacher disagreement score0.803
Threshold uncertainty score0.634

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 head0.074
GPT teacher head0.293
Teacher spread0.220 · 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