Research: A Cognitive Test Battery for Intellectual Disabilities

by NFXF

This announcement has been posted as a courtesy by the National Fragile X Foundation (NFXF) on behalf of National Institutes of Health. The announcement and the parties conducting and sponsoring the research meet guidelines established by the NFXF regarding relevancy and appropriateness to Fragile X. The NFXF takes no position and makes no claims as to the potential benefits of the study including those studies involving medications, and cannot be responsible for any outcomes, lack of outcomes or unintended side effects. Your name or other personal information have not been shared with the researchers/company/institution. If interested in participating in this research, it is your responsibility to use the contact information in this announcement. Additional opportunities for being part of research studies can be found at research.fragilex.org.

NIH ToolboxA Study Funded by the National Institutes of Health

The purpose of this research is to explore whether certain types of intellectual or cognitive tests are reliable, valid and sensitive to improvement in evaluating treatment responses among individuals with intellectual disability. This newer cognitive test has been shown to accurately measure various cognitive skills across a wide age range, but has yet to be adapted and tested among individuals with intellectual disabilities.

Who

Participants include individuals between the ages of 6-25 years old with a confirmed diagnosis of intellectual disability caused by fragile X syndrome, Down syndrome, or another cause.

What

Participation in the study involves three visits to a clinic. The first visit lasts approximately seven to eight hours and is scheduled over a two-day period. The second visit is scheduled approximately four weeks later and will be much shorter, only lasting about one hour.

Participants will be asked to return for a third visit. The schedule for the third visit is the same as the first visit and will take place approximately two years later. These visits will include cognitive testing for your son/daughter and parents/guardian will be asked to fill out questionnaires and participate in interview surveys.

Where

This is a multi-site study with teams in Sacramento, Chicago, and Denver seeking participants.

This study is under the direction of Dr. David Hessl at UC Davis Mind Institute, Dr. Elizabeth Berry-Kravis at Rush University Medical Center, and Dr. Karen Riley at the University of Denver.

Contact information

Rebecca Shields
Study Coordinator
UC Davis MIND Institute
Department of Psychiatry & Behavioral Sciences
2825 50th Street
Sacramento, CA 95817
P: 916-703-0121.
F: 916-703-0340
rhshields@ucdavis.edu

Claire Michalak
Clinical Research Coordinator
Rush University Medical Center
Pediatric Neurology Fragile X Research
1725 W. Harrison St. Suite 718
Chicago, IL 60612
P: 312-563-4937
F: 312-942-4168
Claire_Michalak@rush.edu

Jeanine Coleman, PhD
Clinical Assistant Professor
Morgridge College of Education
University of Denver
1999 East Evans Avenue
Denver, CO 80208
P: 303-871-2496
Jeanine.Coleman@du.edu