Evidence map›Paper›PMID 30825084›Full record

ArticleJournal of autism and developmental disorders2020

Decisional Capacity for Informed Consent in Males and Females with Fragile X Syndrome.

Anne C Wheeler, Amanda Wylie, Melissa Raspa, Adrienne Villagomez, Kylee Miller, Anne Edwards, Margaret DeRamus, Paul S Appelbaum, Donald B Bailey

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Journal of autism and developmental disorders, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
5citing papers in PubMed, 1 pooled it
–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

5 citing papers in PubMed, 1 synthesis or guideline pooled it.

  1. Pooled it
  2. Standardised capacity measures and cognition in the assessment of capacity in children and adolescents: a systematic review.Psychiatry, psychology, and law : an interdisciplinary journal of the Australian and New Zealand Association of Psychiatry, Psychology and Law · 2025
    Article
  3. Article
  4. Article
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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.

Anne C WheelerRTI International, 3040 E. Cornwallis Road, P.O. Box 12194, Research Triangle Park, NC, 27709, USA. Acwheeler@rti.org.
Amanda WylieRTI International, 3040 E. Cornwallis Road, P.O. Box 12194, Research Triangle Park, NC, 27709, USA.
Melissa RaspaRTI International, 3040 E. Cornwallis Road, P.O. Box 12194, Research Triangle Park, NC, 27709, USA.
Adrienne VillagomezChildren's Hospital Colorado, Anschutz Medical Campus, 13123 East 16th Avenue, Aurora, CO, 80045, USA.
Kylee MillerOregon Health Sciences University, 3181 SW Sam Jackson Park Rd, Portland, OR, 97239, USA.
Anne EdwardsRTI International, 3040 E. Cornwallis Road, P.O. Box 12194, Research Triangle Park, NC, 27709, USA.
Margaret DeRamusCarolina Institute for Developmental Disabilities, University of North Carolina at Chapel Hill, 101 Renee Lynne Court, Carrboro, NC, 27714, USA.
Paul S AppelbaumVagelos College of Physicians and Surgeons, Columbia University, 1051 Riverside Drive, Unit 122, New York, NY, 10032, USA.
Donald B BaileyRTI International, 3040 E. Cornwallis Road, P.O. Box 12194, Research Triangle Park, NC, 27709, USA.

Funding

Decisional Capacity and Informed Consent in Fragile X SyndromeR01HD071987 · NICHD · RESEARCH TRIANGLE INSTITUTE · PI BAILEY, DONALD B · 2012 to 2016
$3.1M
Eunice Kennedy Shriver National Institute of Child Health and Human Development R01HD071987-01A1NICHD NIH HHS R01 HD071987
6 · The paper itself

Abstract

Although informed consent is critical for all research, there is increased ethical responsibility as individuals with intellectual or developmental disabilities (IDD) become the focus of more clinical trials. This study examined decisional capacity for informed consent to clinical trials in individuals with fragile X syndrome (FXS). Participants were 152 adolescents and adults (80 males, 72 females) with FXS who completed a measure of decisional capacity and a comprehensive battery of neurocognitive and psychiatric measures. Females outperformed males on all aspects of decisional capacity. The ability to understand aspects of the clinical trial had the strongest association with the ability to appreciate and reason about the decision. Scaffolding improved understanding, suggesting researchers can take steps to improve decisional capacity and the informed consent process.

Indexed as

Decision MakingAdolescentAdultChildComprehensionFemaleFragile X SyndromeHumansInformed ConsentMaleMoralsSex FactorsYoung AdultClinical trialsDecisional capacityFragile X syndromeInformed consent

Identifiers

PMID30825084
PMCPMC10258835

What OpenQuestion holds

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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.