Evidence map›Paper›PMID 40549577›Full record

ArticleAJOB empirical bioethics

Development and Validation of a Stakeholder-Driven, Self-Contained Electronic Informed Consent Platform for Trio-Based Genomic Research Studies.

Bethany Y Norton, James Liu, Sara A Lewis, Helen Magee, Tyler N Kruer, Rachael Dinh, Somayeh Bakhtiari, Sandra H Nordlie, Sheetal Shetty, Jennifer Heim and 28 more

Abstract readValidation Study
PubMed Full text at PMC Publisher
In one paragraph

Article in AJOB empirical bioethics. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.

0numbers the graph read from it
0cells of the map it votes in
2citing 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

2 citing papers in PubMed.

  1. Article
  2. Article
4 · The record

Corrections and comments

5 · Who and what money

Authors and funding

38 authors.

Bethany Y NortonBarrow Neurological Institute, Phoenix Children's, Phoenix, Arizona, USA.
James LiuBarrow Neurological Institute, Phoenix Children's, Phoenix, Arizona, USA.
Sara A LewisBarrow Neurological Institute, Phoenix Children's, Phoenix, Arizona, USA.
Helen MageeBarrow Neurological Institute, Phoenix Children's, Phoenix, Arizona, USA.
Tyler N KruerBarrow Neurological Institute, Phoenix Children's, Phoenix, Arizona, USA.
Rachael DinhBarrow Neurological Institute, Phoenix Children's, Phoenix, Arizona, USA.
Somayeh BakhtiariBarrow Neurological Institute, Phoenix Children's, Phoenix, Arizona, USA.
Sandra H NordlieBarrow Neurological Institute, Phoenix Children's, Phoenix, Arizona, USA.
Sheetal ShettyBarrow Neurological Institute, Phoenix Children's, Phoenix, Arizona, USA.
Jennifer HeimBarrow Neurological Institute, Phoenix Children's, Phoenix, Arizona, USA.
Yumi NishiyamaPrograms in Behavioral Health, Biomedical Informatics, Molecular & Cellular Biology, and Neuroscience, Arizona State University, Tempe, Arizona, USA.
Jorge ArangoBarrow Neurological Institute, Phoenix Children's, Phoenix, Arizona, USA.
Darcy JohnsonBarrow Neurological Institute, Phoenix Children's, Phoenix, Arizona, USA.
Lee SeabrookeBarrow Neurological Institute, Phoenix Children's, Phoenix, Arizona, USA.
Mitchell ShubBarrow Neurological Institute, Phoenix Children's, Phoenix, Arizona, USA.
Robert RosenbergBarrow Neurological Institute, Phoenix Children's, Phoenix, Arizona, USA.
Michele ShustermanCerebral Palsy Research Network, Greenville, South Carolina, USA.
Stephen WisniewskiDepartment of Epidemiology, University of Pittsburgh, Pittsburgh, Pennsylvania, USA.
Blair CooperCerebral Palsy Research Network, Greenville, South Carolina, USA.
Erin RothwellDepartment of Obstetrics & Gynecology, University of Utah, Salt Lake City, Utah, USA.
Michael C FaheyDepartment of Paediatrics, Monash University, Melbourne, Victoria, Australia.
M Wade ShraderDepartment of Orthopedics, AI DuPont Children's Hospital, Wilmington, Delaware, USA.
Nancy LennonDepartment of Orthopedics, AI DuPont Children's Hospital, Wilmington, Delaware, USA.
Joyce OleszekDepartment of Physical Medicine & Rehabilitation, Colorado Children's Hospital, Aurora, Colorado, USA.
Wendy PierceDepartment of Physical Medicine & Rehabilitation, Colorado Children's Hospital, Aurora, Colorado, USA.
Hannah FlemingDepartment of Physical Medicine & Rehabilitation, Colorado Children's Hospital, Aurora, Colorado, USA.
Mohan BelthurBarrow Neurological Institute, Phoenix Children's, Phoenix, Arizona, USA.
Jennifer TintoDivision of Complex Care, Department of Pediatrics, Nationwide Children's, Columbus, Ohio, USA.
Garey NoritzDivision of Complex Care, Department of Pediatrics, Nationwide Children's, Columbus, Ohio, USA.
Laurie GladerDivision of Complex Care, Department of Pediatrics, Nationwide Children's, Columbus, Ohio, USA.
Kelsey SteffenDepartment of Neurology, Washington University, St. Louis, Missouri, USA.
William WalkerDepartment of Pediatrics, Division of Developmental Medicine, Seattle Children's, Seattle, Washington, USA.
Deborah GrenardDepartment of Pediatrics, Division of Developmental Medicine, Seattle Children's, Seattle, Washington, USA.
Bhooma AravamuthanDepartment of Neurology, Washington University, St. Louis, Missouri, USA.
Kristie BjornsonDepartment of Pediatrics, Division of Developmental Medicine, Seattle Children's, Seattle, Washington, USA.
Malin JosephBarrow Neurological Institute, Phoenix Children's, Phoenix, Arizona, USA.
Paul GrossCerebral Palsy Research Network, Greenville, South Carolina, USA.
Michael C KruerBarrow Neurological Institute, Phoenix Children's, Phoenix, Arizona, USA.

Funding

Genomic Insights into the Neurobiology of Cerebral PalsyR01NS106298 · NINDS · UNIVERSITY OF ARIZONA · PI KRUER, MICHAEL C · 2019 to 2023
$3.7M
Genomic analysis of the Multiplex, Autozygous Populations in Cerebral Palsy (MAP CP) cohort: a focused approach to a complex diseaseR01NS127108 · NINDS · UNIVERSITY OF ARIZONA · PI Michael C Kruer · 2023 to 2026
$2.6M
NINDS NIH HHS R01 NS106298NINDS NIH HHS R01 NS127108
6 · The paper itself

Abstract

backgroundIncreasingly long and complex informed consents have yielded studies demonstrating comparatively low participant

methodsiConsent development incorporated stakeholder perspectives including researchers, patient advocates, institutional review board members, and genomic data-sharing considerations. The iConsent platform integrated principles derived from prior electronic consenting research and elements of multimedia learning theory. Participant understanding was assessed in an interactive teachback format. The iConsent application achieved nine of ten proposed desiderata for effective patient-focused electronic consenting for genomic research.

resultsOverall, participants demonstrated high

conclusionsAlthough opportunities exist to optimize iConsent, we show that such an approach is feasible, can satisfy multiple stakeholder requirements, and can realize high participant

Indexed as

Genetic ResearchGenomicsInformed ConsentStakeholder ParticipationAdultComprehensionFemaleHumansInformation DisseminationMaleResearch PersonnelResearch Subjectsethics, researchgenomicsInformed consentmultimediastakeholder participationunderstanding

Identifiers

PMID40549577
PMCPMC12616543

What OpenQuestion holds

Textmetadata
LicenceTDM
Read underepoch 390

Registered trials

None linked

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.