Evidence map›Paper›PMID 40589494›Full record

ArticleClinical epidemiology2025

The Hydrocephalus Association Patient-Powered Interactive Engagement Registry (HAPPIER): Design and Initial Baseline Report.

Noriana E Jakopin, Samantha N Lanjewar, Amanda Garzon, Paul Gross, Richard Holubkov, Abhay Moghekar, Jason Preston, Margaret Romanoski, Chevis N Shannon, Mandeep S Tamber and 4 more

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Clinical epidemiology, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

1 citing paper in PubMed.

  1. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

14 authors.

Noriana E Jakopin *Research Department, Hydrocephalus Association, Bethesda, MD, 20814, USA.
Samantha N Lanjewar *Research Department, Hydrocephalus Association, Bethesda, MD, 20814, USA.ORCID 0000-0002-9227-3668
Amanda GarzonResearch Department, Hydrocephalus Association, Bethesda, MD, 20814, USA.ORCID 0009-0005-8006-5529
Paul GrossCerebral Palsy Research Network, Greenville, SC, 29604, USA.
Richard HolubkovDepartment of Pediatrics, University of Utah, Salt Lake City, UT, 84132, USA.
Abhay MoghekarDepartment of Neurology, Johns Hopkins University School of Medicine, Baltimore, MD, 21287, USA.
Jason PrestonResearch Department, Hydrocephalus Association, Bethesda, MD, 20814, USA.
Margaret RomanoskiAscension St. John Hospital, Detroit, MI, 48236, USA.
Chevis N ShannonAmerican Society for Reproductive Medicine, Birmingham, AL, 35216, USA.
Mandeep S TamberDivision of Neurosurgery, University of British Columbia, British Columbia Children's Hospital, Vancouver, BC, V6H 3V4, Canada.
Tessa Van der WilligenGeorgetown University, Washington, DC, 20057, USA.
Melissa SloanAmerican University, Washington, DC, 20016, USA.
Monica J ChauResearch Department, Hydrocephalus Association, Bethesda, MD, 20814, USA.ORCID 0000-0001-8858-9937
Jenna E KoschnitzkyResearch Department, Hydrocephalus Association, Bethesda, MD, 20814, USA.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

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.

Indexed as

databasehydrocephaluspatient registry

Identifiers

PMID40589494
PMCPMC12206904

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Registered trials

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.