APA
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Jakopin, N. E., Lanjewar, S. N., Garzon, A., Gross, P., Holubkov, R., Moghekar, A., … Koschnitzky, J. E. (2024). The Hydrocephalus Association Patient-Powered Interactive Engagement Registry (HAPPIER): Design and Initial Baseline Report. MedRxiv.
Chicago/Turabian
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Jakopin, Noriana E., Samantha N Lanjewar, Amanda Garzon, Paul Gross, R. Holubkov, A. Moghekar, Jason Preston, et al. “The Hydrocephalus Association Patient-Powered Interactive Engagement Registry (HAPPIER): Design and Initial Baseline Report.” medRxiv (2024).
MLA
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Jakopin, Noriana E., et al. “The Hydrocephalus Association Patient-Powered Interactive Engagement Registry (HAPPIER): Design and Initial Baseline Report.” MedRxiv, 2024.
BibTeX Click to copy
@article{noriana2024a,
title = {The Hydrocephalus Association Patient-Powered Interactive Engagement Registry (HAPPIER): Design and Initial Baseline Report},
year = {2024},
journal = {medRxiv},
author = {Jakopin, Noriana E. and Lanjewar, Samantha N and Garzon, Amanda and Gross, Paul and Holubkov, R. and Moghekar, A. and Preston, Jason and Romanoski, Margaret and Shannon, Chevis N. and Tamber, M. and van der Willigen, Tessa and Sloan, Melissa and Chau, Monica J. and Koschnitzky, Jenna E.}
}
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.