Evidence map›Paper›PMID 41322083›Full record

ArticleDigital biomarkers

Breathing Dysfunction as a Meaningful and Measurable Aspect of Health in Rett Syndrome: A Caregiver's Perspective.

Robert Wright, Jessica Li, Jennifer M Blankenship, Jennifer Richards, Monica Coenraads, Jana von Hehn, Ieuan Clay, Kate Lyden, Krista S Leonard-Corzo

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Article in Digital biomarkers. 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

9 authors.

Robert WrightVivoSense, Inc., Newport Coast, CA, USA.
Jessica LiGreat Strides Behavioral Consulting, Inc., Maryland Heights, MO, USA.
Jennifer M BlankenshipVivoSense, Inc., Newport Coast, CA, USA.
Jennifer RichardsVivoSense, Inc., Newport Coast, CA, USA.
Monica CoenraadsRett Syndrome Research Trust, New York, NY, USA.
Jana von HehnRett Syndrome Research Trust, New York, NY, USA.
Ieuan ClayVivoSense, Inc., Newport Coast, CA, USA.
Kate LydenVivoSense, Inc., Newport Coast, CA, USA.
Krista S Leonard-CorzoVivoSense, Inc., Newport Coast, CA, USA.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Introduction: Incorporating outcome measures that assess the most impactful symptoms is a priority for clinical trials. We qualitatively examined whether caregivers of individuals with Rett syndrome deemed breathing dysfunction as a meaningful and measurable aspect of health. Methods: We conducted semi-structured interviews ( Results: Themes and subthemes for experiences with breathing dysfunction emerged: (1) meaningfulness; (2) impact; and (3) connecting with other symptoms. Two themes for preferences for digitally measuring breathing dysfunction emerged: (1) conditional willingness and (2) benefits of digital measurement. Conclusion: Caregivers reported that breathing dysfunction was meaningful and measurable and had significant impacts on their child's lives as well as theirs and their families. This study lays the groundwork for guiding the development of novel measures and outcomes within future clinical trials managing breathing dysfunction in Rett syndrome.

Indexed as

Breathing dysfunctionMeaningful aspectQualitative researchRett syndrome

Identifiers

PMID41322083
PMCPMC12659606

What OpenQuestion holds

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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.