Evidence map›Paper›PMID 36213318›Full record

ArticleInternational review of research in developmental disabilities2022

Considerations for measuring individual outcomes across contexts in Down syndrome: Implications for research and clinical trials.

Anna J Esbensen, Emily K Schworer, Deborah J Fidler, Angela John Thurman

Open access · greenAbstract read
In one paragraph

Article in International review of research in developmental disabilities, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers.

0numbers the graph read from it
0cells of the map it votes in
6citing papers in PubMed
14.3field-weighted citation impact, top 1% of its field
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

6 citing papers in PubMed, 7 citations in OpenAlex.

  1. Review
  2. 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

4 authors at 4 institutions in 1 country.

Anna J EsbensenDivision of Developmental and Behavioral Pediatrics, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA.
Emily K SchworerDivision of Developmental and Behavioral Pediatrics, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA.
Deborah J FidlerHuman Development and Family Studies, Colorado State University, Fort Collins, CO, USA.
Angela John ThurmanUniversity of California Davis Health, MIND Institute and Department of Psychiatry and Behavioral Sciences, Sacramento, CA, USA.
Cincinnati Children's Hospital Medical Center · USColorado State University · USUniversity of California, Davis · USUniversity of Cincinnati Medical Center · US

Funding

Research Project: Pathologic Significance of Maternal AutoantibodiesP50HD103526 · NICHD · UNIVERSITY OF CALIFORNIA AT DAVIS · PI LEONARD J. ABBEDUTO, Melissa Dawn Bauman · 2020 to 2026
$9.7M
INCLUDE19 – Evaluating outcome measures in young adults with Down syndromeR01HD093754 · NICHD · CINCINNATI CHILDRENS HOSP MED CTR · PI Anna J. Esbensen · 2018 to 2026
$6.2M
Executive Function Outcome Measures for Young Children with Down SyndromeR01HD099150 · NICHD · COLORADO STATE UNIVERSITY · PI DEBORAH J FIDLER · 2019 to 2026
$4.7M
Evaluating Assessment and Medication Treatment of ADHD in Children with Down SyndromeR33HD100934 · NICHD · CINCINNATI CHILDRENS HOSP MED CTR · PI ESBENSEN, ANNA J., FROEHLICH, TANYA E. · 2022 to 2024
$4.2M
Expressive Language Sampling as an Outcome MeasureR01HD074346 · NICHD · UNIVERSITY OF CALIFORNIA AT DAVIS · PI ABBEDUTO, LEONARD J. · 2013 to 2017
$3.9M
Early childhood communication outcome measures for DSR01HD093654 · NICHD · UNIVERSITY OF CALIFORNIA AT DAVIS · PI THURMAN, ANGELA JOHN · 2018 to 2022
$3.1M
Evaluating Assessment and Medication Treatment of ADHD in Children with Down SyndromeR61HD100934 · NICHD · CINCINNATI CHILDRENS HOSP MED CTR · PI ESBENSEN, ANNA J., FROEHLICH, TANYA E. · 2019 to 2021
$1.5M
Early risk for ADHD symptoms in young children with Down syndromeR21HD101000 · NICHD · COLORADO STATE UNIVERSITY · PI FIDLER, DEBORAH J · 2019 to 2020
$433k
NICHD NIH HHS P50 HD103526NICHD NIH HHS R01 HD074346NICHD NIH HHS R01 HD093654NICHD NIH HHS R01 HD093754NICHD NIH HHS R01 HD099150NICHD NIH HHS R21 HD101000NICHD NIH HHS R33 HD100934NICHD NIH HHS R61 HD100934
6 · The paper itself

Abstract

Individuals with Down syndrome (DS) are increasingly involved in clinical trials that target developmental outcomes, like cognition and behavior. The increased focus on treatment in DS has led to ongoing discussions regarding the selection of outcome measures using syndrome-informed criteria. This discourse is warranted as clinical trials can fail if the outcome measures selected are inappropriate for individuals with DS or do not take into account the behavioral phenotype commonly associated with DS. This review focuses on the challenges present in the measurement of outcomes in DS, with a specific focus on considerations made in evaluating cognitive, language, and behavioral/psychopathology outcomes. This review also provides a summary of recommendations for assessment of outcomes in these domains as well as recommendations for future research. The impact of physical health and assessment psychometrics on the measurement of outcomes is also reviewed.

Identifiers

PMID36213318
PMCPMC9536481
OpenAlexW4293223602

What OpenQuestion holds

Textmetadata
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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.