Information on epilepsy genetics available online for people with epilepsy and their families.

Natalie J Strohmayer, Itzel A Camarillo, Hyunmi Choi, Ruth Ottman

Abstract read

In one paragraph

Article in Epilepsy & behavior : E&B, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

0numbers the graph read from it

0cells of the map it votes in

0citing 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

0 citing papers in PubMed.

No citing paper in PubMed yet.

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

4 authors.

Natalie J StrohmayerDepartment of Epidemiology, Mailman School of Public Health, Columbia University, New York, NY 10032, United States. Electronic address: njs2194@cumc.columbia.edu.

Itzel A CamarilloGertrude H. Sergievsky Center, Vagelos College of Physicians & Surgeons, Columbia University, New York, NY 10032, United States; Teacher's College, Columbia University, 525 West 120th Street, New York, NY 10027, United States. Electronic address: iac2112@tc.columbia.edu.

Hyunmi ChoiDepartment of Neurology, Vagelos College of Physicians & Surgeons, Columbia University, New York, NY 10032, United States. Electronic address: hc323@cumc.columbia.edu.

Ruth OttmanDepartment of Epidemiology, Mailman School of Public Health, Columbia University, New York, NY 10032, United States; Gertrude H. Sergievsky Center, Vagelos College of Physicians & Surgeons, Columbia University, New York, NY 10032, United States; Department of Neurology, Vagelos College of Physicians & Surgeons, Columbia University, New York, NY 10032, United States; Division of Translational Epidemiology and Mental Health Equity, New York State Psychiatric Institute, New York, NY 10032, United States. Electronic address: ro6@columbia.edu.

Funding

Psychosocial Impact of Genetics in EpilepsyR01NS104076 · NINDS · COLUMBIA UNIVERSITY HEALTH SCIENCES · PI OTTMAN, RUTH · 2018 to 2022

$3.2M

NINDS NIH HHS R01 NS104076

6 · The paper itself

Abstract

objectiveTo evaluate and compare the types of information available online about epilepsy genetics to people with epilepsy and their family members on websites and social media platforms.

methodsTo identify websites, we used the search terms "epilepsy," "genetic epilepsy," and "epilepsy genetics" in Google, using Incognito mode. We selected the first ten English, non-sponsored websites for analysis. Websites were then classified according to their target audience (healthcare professionals vs. lay persons), and as epilepsy-specific or not and genetic-focused or not. On YouTube, X, Facebook, and TikTok, we searched using the terms "epilepsy" and "genetic epilepsy." Posts were assessed for genetic-related themes, and the frequency of discussion was recorded.

resultsAmong 31 websites assessed, only one did not discuss genetics in any capacity. However, many sources did not expand upon the potential role of genetics in epilepsy, and genetic testing was not frequently discussed. On social media, epilepsy genetics was more frequently discussed using a more specific search term, "genetic epilepsy" than using "epilepsy." In posts that addressed genetics, the importance of genetic testing was the most frequent topic discussed. Other complexities, including offspring epilepsy risk, mode of inheritance, genetic heterogeneity, and variable expressivity, were very seldom discussed. Genetics was more frequently addressed in posts on YouTube and X than in those on Facebook or TikTok. SIGNIFICANCE: Online information about epilepsy genetics is difficult to encounter by chance; users must actively seek out this information. While information is available, accessibility and depth of the discussion is limited.

Indexed as

EpilepsyFamilyInternetHumansSocial MediaBehaviorEthical, legal, and social implicationsGeneticInformation seekingMedia exposureOnline information

Identifiers

PMID40043599

DOI10.1016/j.yebeh.2025.110361

PMCPMC11972876

What OpenQuestion holds

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LicenceTDM

Read underepoch 390

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.