Haemophilia Registry of the Medical Committee of the Swiss Haemophilia Society
Bibliographic record
Abstract
Summary The Haemophilia Registry of the Swiss Haemophilia Society is currently more than 12 years old. We present here the data as from October 31st, 2012. Registered are patients with haemophilia A and B, von Willebrand disease with VWF : R-Co < 10% and other rare factor deficiencies. For this latter group, inclusion in the Registry depends on the clinical relevance of the bleeding disorder, not on the factor level. Data come directly from the Swiss haemophilia reference and treatment centers and should be updated once a year. Currently 967 patients are registered, the majority (587) presenting with haemophilia A. Disease severity is graded according to ISTH criteria. Basic epidemiological findings are similar to those from larger registries in Europe, Canada or the USA. More that 60% of persons with haemophilia in Switzerland are treated on-demand, with the exception of young patients (<20 years) who present an 80 to 90% rate of prophylactic therapy. Nevertheless, global use of factor concentrates went continuously up over the last decade and reaches now 5.52 Units per capita, still a low value compared to other high-income European countries. A recent survey of the Registry shows that treaters’ compliance with yearly data updates is insufficient; measures will be undertaken in 2013 to enhance data quality.
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 imitationNot 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.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.002 | 0.008 |
| Meta-epidemiology (narrow) | 0.001 | 0.000 |
| Meta-epidemiology (broad) | 0.001 | 0.000 |
| Bibliometrics | 0.005 | 0.006 |
| Science and technology studies | 0.001 | 0.000 |
| Scholarly communication | 0.002 | 0.001 |
| Open science | 0.001 | 0.001 |
| Research integrity | 0.001 | 0.001 |
| Insufficient payload (model declined to judge) | 0.048 | 0.021 |
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.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.
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".