The Hydrocephalus Association Patient-Powered Interactive Engagement Registry (HAPPIER): Design and Initial Baseline Report
Bibliographic record
Abstract
ABSTRACT Objective Hydrocephalus is a neurological condition characterized by an accumulation of cerebrospinal fluid with no cure and limited treatments. There is a significant gap in hydrocephalus research where patients lack opportunities to voice their perspectives on their condition. The Hydrocephalus Association Patient-Powered Interactive Engagement Registry (HAPPIER) database was created to highlight the quality-of-life outcomes in hydrocephalus from a longitudinal perspective. HAPPIER ensures that the lived experiences of those affected by hydrocephalus are highlighted, and provides a platform for researchers to access this data or distribute their own surveys, ultimately aiming to improve patient-centered care and outcomes. This publication introduces the registry to the medical and scientific community by highlighting demographics, etiology, treatments, symptom profiles, and diagnosed comorbidities of the participants. Methods HAPPIER was developed by the Hydrocephalus Association and a 10-member steering committee. Development of its surveys was informed by other registries with similar goals, existing surveys and assessments, and input from University of Utah Data Center faculty. The study population was recruited using social and traditional media, referrals from medical professionals, and advertisement at Hydrocephalus Association-sponsored events. Results Of the 691 survey participants (referring to those with hydrocephalus), 451 (65.3%) were individuals responding for themselves. 380 (55.0%) of the registry population was female, 594 (86.0%) was white, and 606 (87.7%) was from the United States and territories. The most common age reported for diagnosis was between 0 and 11 months (46.2%), and the most common hydrocephalus etiology reported was congenital hydrocephalus (43.8%). The most prevalent treatment reported was a shunt(s) (71.2%). The most commonly-reported symptom was headaches (60.3%), and 69.9% of participants reported being diagnosed with movement impairments and 70.8% with other health conditions. Conclusion HAPPIER is a novel database developed to address the gaps in data in non-clinical outcomes of hydrocephalus, which are critical to clinical care and understanding hydrocephalus in its totality. Patient perspectives and outcomes have been historically underrepresented. By directly engaging individuals living with hydrocephalus and their caregivers, HAPPIER is designed to incorporate essential patient perspectives through planned longitudinal data collection and patient surveys. These data are open to investigators interested in analyzing the collected data.
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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 | 0.019 | 0.032 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.001 | 0.001 |
| Bibliometrics | 0.002 | 0.003 |
| Science and technology studies | 0.003 | 0.001 |
| Scholarly communication | 0.002 | 0.003 |
| Open science | 0.001 | 0.003 |
| Research integrity | 0.001 | 0.002 |
| Insufficient payload (model declined to judge) | 0.015 | 0.007 |
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".