Proceedings of the Canadian Society of Allergy and Clinical Immunology Annual Scientific Meeting 2018: Part Two
Bibliographic record
Abstract
Background: Hereditary angioedema (HAE) is an unpredictable and serious genetic disorder affecting approximately 1:10,000 to 1:50,000.It is an autosomal dominant disorder due to C1 inhibitor deficiency.Clinically, it is manifested by painful, unpredictable edema of the face, larynx, abdomen, genitals and extremities.It can be debilitating and if left untreated, may be fatal.We sought to better understand the demographic profiles of patients living with HAE in Canada.Methods: In 2017, a comprehensive survey was sent out to all HAE Canada members by email to gather information on HAE in Canada.Data from respondents have been collected and analyzed using percentage of total surveys to provide data on demographics of these patients.Results: The demographic location of HAE patients living in Canada includes Ontario, Alberta, Manitoba, British Columbia, Nova Scotia, Quebec, Saskatchewan and Newfoundland and Labrador.140 respondents indicated their relationship to HAE as; 81% are adults living with HAE, 10% are caregivers of an adult living with HAE who lives with them, 2% are caregivers of an adult living with HAE who does not live with them, 2% are adults awaiting a diagnosis, and 4% are other or unknown.109 respondents indicated 79% are female and 21% are male.When respondents were asked about their HAE type, 60% were found to have type 1/2 C1-inhibitor protein deficiency, 26% have HAE with normal C1-inhibitor, 10% unsure, and 4% have acquired angioedema.Conclusions: This survey helps to better understand the current demographic profile of patients living with HAE and is the first national HAE survey done in Canada.However, data interpretation is limited due to uncertainty of necessary sample size required to be representative of the true population.Overall, our results demonstrate that HAE patients can be found across Canada and that the majority of patients in this survey are aware of their diagnosis.
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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 | 0.003 | 0.004 |
| Meta-epidemiology (narrow) | 0.001 | 0.000 |
| Meta-epidemiology (broad) | 0.001 | 0.001 |
| Bibliometrics | 0.003 | 0.001 |
| Science and technology studies | 0.002 | 0.001 |
| Scholarly communication | 0.004 | 0.001 |
| Open science | 0.001 | 0.002 |
| Research integrity | 0.003 | 0.003 |
| Insufficient payload (model declined to judge) | 0.190 | 0.077 |
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".