Research news and commentary #4 for 2017

Down Syndrome Research Forum 2017, UK (posted yesterday)

For people with Down syndrome, varying test results can make it harder to get the right vision prescription

Eureka Alert, 4 May 2017 -

Even objective, automated vision testing--using a device called an autorefractor--gives variable results in patients with Down syndrome, reports a study in the May issue of Optometry and Vision Science, the official journal of the American Academy of Optometry ...

• The full text of the research report is available free online

The Arizona Cognitive Test Battery for Down Syndrome: Test-Retest Reliability and Practice Effects
Jamie O. Edgin, American Journal on Intellectual and Developmental Disabilities, May 2017
Abstract

A multisite study investigated the test-retest reliability and practice effects of a battery of assessments to measure neurocognitive function in individuals with Down syndrome (DS). The study aimed to establish the appropriateness of these measures as potential endpoints for clinical trials. Neurocognitive tasks and parent report measures comprising the Arizona Cognitive Test Battery (ACTB) were administered to 54 young participants with DS (7–20 years of age) with mild to moderate levels of intellectual disability in an initial baseline evaluation and a follow-up assessment 3 months later. Although revisions to ACTB measures are indicated, results demonstrate adequate levels of reliability and resistance to practice effects for some measures. The ACTB offers viable options for repeated testing of memory, motor planning, behavioral regulation, and attention. Alternative measures of executive functioning are required.

Article Citation:

Jamie O. Edgin, Payal Anand, Tracie Rosser, Elizabeth I. Pierpont, Carlos Figueroa, Debra Hamilton, Lillie Huddleston, Gina Mason, Goffredina Spanò, Lisa Toole, Mina Nguyen-Driver, George Capone, Leonard Abbeduto, Cheryl Maslen, Roger H. Reeves, and Stephanie Sherman (2017) The Arizona Cognitive Test Battery for Down Syndrome: Test-Retest Reliability and Practice Effects. American Journal on Intellectual and Developmental Disabilities: May 2017, Vol. 122, No. 3, pp. 215-234.

• Abstract online, full text available for purchase 

Outcome Measures for Clinical Trials in Down Syndrome

Anna J. Esbensen et al, American Journal on Intellectual and Developmental Disabilities, May 2017

Abstract

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.

Article Citation:

Anna J. Esbensen, Stephen R. Hooper, Deborah Fidler, Sigan L. Hartley, Jamie Edgin, Xavier Liogier d'Ardhuy, George Capone, Frances A. Conners, Carolyn B. Mervis, Leonard Abbeduto, Michael Rafii, Sharon J. Krinsky-McHale, Tiina Urv, and Outcome Measures Working Group (2017) Outcome Measures for Clinical Trials in Down Syndrome. American Journal on Intellectual and Developmental Disabilities: May 2017, Vol. 122, No. 3, pp. 247-281.

• Abstract online, full text available for purchase

New research shows role-playing disability promotes distress, discomfort and disinterest

Science Daily, 11 April 2017

... a recent study published by Michelle Nario-Redmond, Ph.D., professor of psychology, reveals that disability simulations often result in feelings of fear, apprehension and pity toward those with disabilities, proving Nario-Redmond's thesis that disability simulations do more harm than good ...

• Abstract online: Michelle R. Nario-Redmond, Dobromir Gospodinov, Angela Cobb. Crip for a Day: The Unintended Negative Consequences of Disability Simulations, Rehabilitation Psychology, 2017

New Clinical Trial of Alzheimer's disease vaccine for people with Down syndrome

Most of our readers will not qualify to participate in this study, but will be interested that it is being done:

We are launching a new clinical study for people with Down syndrome that will test the safety and tolerability of an investigational vaccine which might delay the onset of Alzheimer’s disease-related cognitive decline.

Since individuals with Down syndrome develop Alzheimer’s at a much higher rate than the general population, this study will test whether an investigational vaccine can affect Alzheimer’s-related brain changes in people with Down syndrome. This is the world’s first clinical trial to test an anti-amyloid vaccine for possible treatment of Alzheimer’s disease in people with Down syndrome  25 to 45 years of age. 

The study is a randomized, placebo-controlled, double-blinded Phase I study. Study participants will be randomly given either the active investigational vaccine or a non-active placebo. The study will last 24 months. 

For more information please visit www.massgeneral.org/downsyndromeresearch.