A Survey of Epidermolysis Bullosa Care in the United States and Canada
Bibliographic record
Abstract
Epidermolysis bullosa (EB) is a group of rare, inherited, blistering diseases that typically present in infancy. EB is not curable, and treatment is entirely supportive. There is a paucity of standardized recommendations to guide management. To assess the current state of EB care, an original online survey was conducted targeting attending physicians experienced with the care of EB. Members of the Society for Pediatric Dermatology residing in the United States and Canada served as the source pool. Parameters assessed included clinic visits, availability of subspecialists, and performance of surveillance studies. Fifty-six completed surveys were analyzed. Most providers saw between 1 and 10 individuals with EB per year in a general dermatology clinic. For each EB type there was considerable variation in the frequency of clinic visits, availability and use of specialists, and use of laboratory and imaging studies. Some agreement was observed in the frequency of follow-up for infants with more severe EB types, as well as for the components of a history, physical, and routine laboratory studies. These findings describe variations in the current state of EB care that pediatric dermatologists provide. The development and acceptance of evidence-based guidelines and outcome measures may lead to greater uniformity in EB care.
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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 | 0.001 | 0.003 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.001 | 0.006 |
| Science and technology studies | 0.002 | 0.001 |
| Scholarly communication | 0.001 | 0.000 |
| Open science | 0.001 | 0.001 |
| Research integrity | 0.000 | 0.001 |
| Insufficient payload (model declined to judge) | 0.002 | 0.000 |
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.
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".