Evidence map›Paper›PMID 41575710›Full record

ArticleJournal of autism and developmental disorders2026

Association of the Observer-Reported Communication Ability (ORCA) Measure with Established Communication Measures: Insights From the Angelman Syndrome Natural History Study.

Abigail Rader, Li Lin, Harrison N Jones, Wen-Hann Tan, Anjali Sadhwani, Allyson Berent, Batsheva Friedman, Nicole Lucas, Kelly Gordon, Bryce B Reeve

Abstract read
In one paragraph

Article in Journal of autism and developmental disorders, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

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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

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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

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5 · Who and what money

Authors and funding

10 authors.

Abigail RaderDepartment of Population Health Sciences, Center for Health Measurement, Duke University School of Medicine, Durham, NC, USA. abigail.rader@duke.edu.ORCID http://orcid.org/0000-0002-6315-9129
Li LinDepartment of Population Health Sciences, Center for Health Measurement, Duke University School of Medicine, Durham, NC, USA.
Harrison N JonesDepartment of Communication Sciences and Disorders, East Carolina University, 1310 Health Science Drive, Greenville, NC, USA.
Wen-Hann TanDivision of Genetics and Genomics, Boston Children's Hospital, Harvard Medical School, Boston, MA, USA.
Anjali SadhwaniDepartment of Psychiatry and Behavioral Sciences, Boston Children's Hospital, Harvard Medical School, Boston, MA, USA.
Allyson BerentFoundation for Angelman Syndrome Therapeutics (FAST), Austin, TX, USA.
Batsheva FriedmanDivision of Genetics and Genomics, Boston Children's Hospital, Harvard Medical School, Boston, MA, USA.
Nicole LucasDepartment of Population Health Sciences, Center for Health Measurement, Duke University School of Medicine, Durham, NC, USA.
Kelly GordonDuke Health, Durham, NC, USA.
Bryce B ReeveDepartment of Population Health Sciences, Center for Health Measurement, Duke University School of Medicine, Durham, NC, USA.

Funding

Training and Career Development ComponentU54HD061222 · NICHD · UNIVERSITY OF ALABAMA AT BIRMINGHAM · PI PERCY, ALAN KENNETH · 2009 to 2019
$12.4M
RARE DISEASE CRC FOR NEW THERAPIES AND NEW DIAGNOSTICSU54RR019478 · NCRR · BAYLOR COLLEGE OF MEDICINE · PI BEAUDET, ARTHUR L. · 2003 to 2008
$7.3M
FDA HHS R01 FD006003FDA HHS UH3 FD007304Foundation for Angelman Syndrome Therapeutics Foundation for Angelman Syndrome TherapeuticsNCRR NIH HHS U54 RR019478NICHD NIH HHS U54 HD061222
6 · The paper itself

Abstract

backgroundThe Observer-Reported Communication Ability (ORCA) measure was developed to assess communication in individuals with Angelman syndrome (AS), a rare neurodevelopmental disorder characterized by severely impaired communication, global developmental delay, sleep disturbances, seizures, and motor impairments. Our goal was to evaluate the construct validity of the ORCA measure in AS using longitudinal data and comparisons with other communication measures.

methodsCaregivers of individuals with AS enrolled in a multisite natural history study completed the ORCA measure alongside at least one of three other instruments: the Vineland Adaptive Behavior Scales, 3rd Edition (Vineland-3), Bayley Scales of Infant and Toddler Development, 4th Edition (Bayley-4), or Communication Matrix (CM). ORCA Emerging & Mastery (E&M) T-scores for expressive, receptive, and pragmatic communication were compared with other measures. ORCA change scores over time were examined by age group and genotype.

resultsIndividuals with AS (n = 192) had a mean age of 12.1 years (range 0.5 to 50.6 years), with 54.7% male. Genotypes included deletions (53.6%), UBE3A mutations (25.5%), and uniparental disomy/imprinting defects (16.1%). ORCA Overall, Expressive, and Receptive T-scores had strong to very strong correlations with Vineland-3, Bayley-4, and CM domains (r = 0.64–0.71). Correlations of the ORCA Pragmatic T-scores showed strong correlations with all measures. ORCA T-score changes were most pronounced in children under 2. DISCUSSION AND

conclusionThe evidence for the construct validity of the ORCA measure supports its use as a research tool for individuals with AS.

Indexed as

Construct validityNeurodevelopmental disordersObserver-reported outcomes (ObsRO)PsychometricsRare disease

Identifiers

PMID41575710
PMCPMC13022773

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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.