Evidence map›Paper›PMID 41329789›Full record

ArticleThe Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association2026

Ethical Considerations for Clinical Data Sharing in Craniofacial Research: Recommendations From a Multidisciplinary Working Group.

Stephanie A Kraft, Laura Stueckle, Kathleen R Bogart, Canice Crerand, Kelly N Evans, Stephanie M Fullerton, Alexis Johns, Erica Klauber, Sara L Kinter, Christy M McKinney and 6 more

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association, 2026. 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

16 authors.

Stephanie A KraftDepartment of Bioethics and Decision Sciences, Geisinger College of Health Sciences, Danville, PA, USA.ORCID 0000-0002-2862-7601
Laura StueckleCenter for Clinical and Translational Research, Seattle Children's Research Institute, Seattle, WA, USA.
Kathleen R BogartSchool of Psychological Science, Oregon State University, Corvallis, OR, USA.
Canice CrerandCraniofacial Center, Nationwide Children's Hospital, Columbus, OH, USA.ORCID 0000-0003-0040-6396
Kelly N EvansCenter for Clinical and Translational Research, Seattle Children's Research Institute, Seattle, WA, USA.ORCID 0000-0002-0345-824X
Stephanie M FullertonDepartment of Bioethics and Humanities, University of Washington, Seattle, WA, USA.
Alexis JohnsCraniofacial Center, Children's Hospital Los Angeles, Los Angeles, CA, USA.ORCID 0000-0003-2029-5873
Erica KlauberChildren's Craniofacial Association, Dallas, TX, USA.
Sara L KinterDepartment of Pediatrics, University of Washington School of Medicine, Seattle, WA, USA.ORCID 0000-0001-6017-4529
Christy M McKinneyDepartment of Pediatrics, University of Washington School of Medicine, Seattle, WA, USA.ORCID 0000-0002-7767-7816
Amy MendilloAmerican Cleft Palate Craniofacial Association, Chapel Hill, NC, USA.
Alexis PrepotenteUniversity of Washington, Seattle, WA, USA.
Amy ScheferRareAction Network, National Organization for Rare Disorders, Danbury, CT, USA.
Nicola M StockCentre for Appearance Research, University of the West of England, Bristol, UK.ORCID 0000-0002-1285-691X
Melissa TumblinEar Community, Broomfield, CO, USA.
Carrie L HeikeCenter for Clinical and Translational Research, Seattle Children's Research Institute, Seattle, WA, USA.ORCID 0000-0003-2178-7730

Funding

Craniofacial microsomia: Accelerating Research and Education (CARE)R01DE029510 · NIDCR · SEATTLE CHILDREN'S HOSPITAL · PI HEIKE, CARRIE LYN, STOCK, NICOLA · 2020 to 2024
$3.2M
NIDCR NIH HHS R01 DE029510
6 · The paper itself

Abstract

ObjectiveTo propose recommendations for ethical, participant-centered clinical data sharing in craniofacial research.DesignSeries of deliberative multidisciplinary expert working group meetings to develop recommendations.SettingTwo 1-h virtual meetings; one all-day hybrid meeting.Patients, ParticipantsWorking group (

Indexed as

Biomedical ResearchCraniofacial AbnormalitiesEthics, ResearchInformation DisseminationHumansethics/health policieshealth policiespediatrics

Identifiers

PMID41329789
PMCPMC12720393

What OpenQuestion holds

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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.