Outcome Measures for Clinical Trials in Down Syndrome

被引：105

作者：

Esbensen, Anna J. ^{[1
]}

Hooper, Stephen R. ^{[2
]}

Fidler, Deborah ^{[3
]}

Hartley, Sigan L. ^{[4
]}

Edgin, Jamie ^{[5
]}

d'Ardhuy, Xavier Liogier ^{[6
]}

Capone, George ^{[7
]}

Conners, Frances A. ^{[8
]}

Mervis, Carolyn B. ^{[9
]}

Abbeduto, Leonard ^{[10
]}

Rafii, Michael ^{[11
,12
]}

Krinsky-McHale, Sharon J. ^{[13
,14
]}

Urv, Tiina ^{[15
]}

机构：

[1] Cincinnati Childrens Hosp Med Ctr, Cincinnati, OH 45229 USA

[2] Univ North Carolina Chapel Hill, Chapel Hill, NC USA

[3] Colorado State Univ, Ft Collins, CO 80523 USA

[4] Univ Wisconsin, Madison, WI 53706 USA

[5] Univ Arizona, Tucson, AZ 85721 USA

[6] Roche Innovat Ctr Basel, Basel, Switzerland

[7] Kennedy Krieger Inst, Baltimore, MD USA

[8] Univ Alabama, Tuscaloosa, AL 35487 USA

[9] Univ Louisville, Louisville, KY 40292 USA

[10] Univ Calif Davis, MIND Inst, Davis Sch Med, Davis, CA 95616 USA

[11] Univ Southern Calif, Los Angeles, CA 90089 USA

[12] Univ Calif San Diego, San Diego, CA 92103 USA

[13] New York State Inst Basic Res Dev Disabil, New York, NY USA

[14] Columbia Univ, Med Ctr, New York, NY 10027 USA

[15] Eunice Kennedy Shriver Natl Inst Child Hlth & Hum, Bethesda, MD USA

来源：

AJIDD-AMERICAN JOURNAL ON INTELLECTUAL AND DEVELOPMENTAL DISABILITIES | 2017年 / 122卷 / 03期

关键词：

Down syndrome; intellectual disability; assessment; cognition; behavior; clinical trials; OBSTRUCTIVE SLEEP-APNEA; SHORT-TERM-MEMORY; MILD COGNITIVE IMPAIRMENT; ALZHEIMERS-DISEASE; YOUNG-CHILDREN; EXECUTIVE FUNCTION; RATING-SCALES; INTELLECTUAL DISABILITIES; SCREENING QUESTIONNAIRE; PSYCHIATRIC-DISORDERS;

D O I：

10.1352/1944-7558-122.3.247

中图分类号：

G76 [特殊教育];

学科分类号：

040109 ;

摘要：

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.

引用

页码：247 / 281

页数：35

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