The Hydrocephalus Association Patient-Powered Interactive Engagement Registry (HAPPIER): Design and Initial Baseline Report
Notice bibliographique
Résumé
Purpose: Hydrocephalus is a neurological condition characterized by an accumulation of cerebrospinal fluid (CSF) 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 captures the lived experiences of those affected by hydrocephalus and provides a platform for researchers to access these data or distribute their own surveys, ultimately aiming to improve patient-centered care and outcomes. This publication introduces the registry by highlighting the demographics, etiology, treatments, symptom profiles, and diagnosed comorbidities of the participants. Methods: The Hydrocephalus Association and a 10-member steering committee developed HAPPIER. Other patient registries, existing surveys and assessments, and University of Utah Data Center faculty guided survey development. The Hydrocephalus Association recruited participants using social and traditional media, medical referrals, and advertisements at events. Results: Of the 691 survey participants with hydrocephalus, 451 (65.3%) responded for themselves. The majority of the registry was female (55.0%), white (86.0%), and from the United States and territories (87.7%). Most were diagnosed between 0– 11 months (46.2%), with congenital hydrocephalus as the most reported etiology (43.8%). Participants reported a shunt(s) as the most prevalent treatment (71.2%) and headaches as the most frequent symptom (60.3%), while 69.9% of participants reported being diagnosed with movement impairments and 70.8% with other health conditions. Conclusion: HAPPIER is a novel database that addresses gaps in data on non-clinical outcomes of hydrocephalus, which are critical to clinical care and understanding hydrocephalus. Patient perspectives and outcomes remain historically underrepresented. By directly engaging individuals living with hydrocephalus and their caregivers, HAPPIER incorporates essential patient perspectives through planned longitudinal data collection and patient surveys. These data are open to investigators interested in analyzing the collected data. Plain Language Summary: Hydrocephalus is a lifelong condition where excess fluid builds up in the brain. A significant gap in research is the lack of information on how hydrocephalus affects the daily lives of those with the condition. To bridge this gap, the Hydrocephalus Association created the Hydrocephalus Association Patient-Powered Interactive Engagement Registry (HAPPIER), a patient registry that gathers the real-world experiences from people living with hydrocephalus. This database helps researchers better understand symptoms, treatments, and challenges, ultimately working toward better patient care. Experts contributed to the development of HAPPIER, using guidance from existing patient registries and surveys. Participants joined through media recruitment, medical referrals, and outreach events. The registry includes 691 people with hydrocephalus, most of whom answered the survey themselves. More than half are female, and the majority are from the United States. Many were diagnosed as infants (between 0-11 months), with congenital hydrocephalus being the most common etiology. Participants most frequently reported receiving a shunt(s) as treatment and experiencing headaches as the most common symptom. Many participants also experienced movement difficulties and other health conditions. The HAPPIER registry gathers data on people with hydrocephalus, including their backgrounds, treatments, symptoms, and other health conditions. The goal is to use ongoing surveys to better understand their experiences and find ways to improve quality of life. Researchers can access these data or conduct their own surveys through HAPPIER, giving patients and caregivers a voice in research and ensuring the patient perspective guides advancements in future studies, treatment, support, and clinical care. Keywords: hydrocephalus, database, patient registry
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Comment cette classification a été obtenuedéplier
Prédiction distillée sur la base complète
Imitation des enseignantsNi prévalence calibrée, ni vérité terrain. Validation humaine à venir. Apprise à partir de 10 348 étiquettes directes de Codex et de 10 348 étiquettes directes de Gemma. Le mode candidate est l'union des têtes enseignantes seuillées; le consensus est leur intersection. Ces sorties portent le statut machine_predicted_unvalidated et ne sont ni des étiquettes humaines ni des étiquettes directes de modèles de pointe.
Scores Codex et Gemma par catégorie
| Catégorie | Codex | Gemma |
|---|---|---|
| Métarecherche | 0,015 | 0,284 |
| Méta-épidémiologie (sens strict) | 0,000 | 0,000 |
| Méta-épidémiologie (sens large) | 0,001 | 0,000 |
| Bibliométrie | 0,000 | 0,000 |
| Études des sciences et des technologies | 0,001 | 0,000 |
| Communication savante | 0,000 | 0,000 |
| Science ouverte | 0,000 | 0,000 |
| Intégrité de la recherche | 0,000 | 0,001 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,000 | 0,000 |
Scores machine (provisoires)
Les deux têtes enseignantes du modèle étudiant, lues sur ce travail. Un score ordonne la base pour la relecture; il n'affirme jamais une catégorie, et le statut de validation accompagne chaque rangée tel quel.
Scores de référence d'un modèle non mature (critères de maturité non atteints, 7 itérations). Un score ordonne; il n'affirme jamais une catégorie.
score_only:v0-immature-baseline · tel quel depuis la passe de notation : score_only signifie que le nombre peut ordonner les travaux, et qu'aucune étiquette de catégorie n'en découleClassification
machine, non validéePrédiction automatique; un appel candidat d’une seule tête enseignante, pas un consensus.
Le détail, modèle par modèle et score par score, se trouve en fin de page sous « Comment cette classification a été obtenue ».