Outcome Measures for Clinical Trials in Down Syndrome

Increasingly individuals with intellectual and developmental disabilities, including Down syndrome, are being targeted for clinical trials. However, a challenge exists in effectively evaluating the outcomes of these new pharmacological interventions. Few empirically evaluated, psychometrically sound...

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Bibliographic Details
Published in:American journal on intellectual and developmental disabilities 2017-05, Vol.122 (3), p.247-281
Main Authors: Esbensen, Anna J, Hooper, Stephen R, Fidler, Deborah, Hartley, Sigan L, Edgin, Jamie, d'Ardhuy, Xavier Liogier, Capone, George, Conners, Frances A, Mervis, Carolyn B, Abbeduto, Leonard, Rafii, Michael, Krinsky-McHale, Sharon J, Urv, Tiina
Format: Article
Language:English
Subjects:
Adaptation, Psychological
Aging
Autism Spectrum Disorders
Behavior
Behavior Problems
Behavioral Sciences
Children & youth
Childrens health
Clinical outcomes
Clinical trials
Clinical Trials as Topic
Cognition
Cognition & reasoning
Developmental Disabilities
Down Syndrome
Down Syndrome - physiopathology
Down Syndrome - psychology
Down Syndrome - therapy
Evidence
Executive Function
Expressive Language
Humans
Hyperactivity
Intellectual disabilities
Intellectual Disability
Interpersonal Competence
Language
Learning
Long Term Memory
Memory
Motor Development
Muscular Strength
Neurosciences
Outcome Assessment, Health Care
Outcome Measures
Outcomes of Treatment
Physical Fitness
Population
Problem Behavior
Psychometrics
Self-Control
Severe Disabilities
Short Term Memory
Skill Development
Sleep
Social Behavior
Social Perception
Working groups
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Summary:Increasingly individuals with intellectual and developmental disabilities, including Down syndrome, are being targeted for clinical trials. However, a challenge exists in effectively evaluating the outcomes of these new pharmacological interventions. Few empirically evaluated, psychometrically sound outcome measures appropriate for use in clinical trials with individuals with Down syndrome have been identified. To address this challenge, the National Institutes of Health (NIH) assembled leading clinicians and scientists to review existing measures and identify those that currently are appropriate for trials; those that may be appropriate after expansion of age range addition of easier items, and/or downward extension of psychometric norms; and areas where new measures need to be developed. This article focuses on measures in the areas of cognition and behavior.
ISSN:1944-7515
1944-7558
DOI:10.1352/1944-7558-122.3.247