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STUDY BASICS

Are you an adult diagnosed with Down syndrome, Williams syndrome, or Fragile X syndrome? You may be able to participate in a research study to help create a questionnaire that measures functioning in adults with developmental disorders. Participants will complete assessments and interviews. Compensation is provided.


STUDY PURPOSE

Many adults living with developmental disorders experience difficulties related to relationships, employment, and independent living, but few tools exist to assess these issues. The purpose of this study is to develop an assessment tool for use in adults with developmental disabilities such as Down syndrome, Williams syndrome, and Fragile X syndrome. Researchers hope their findings lead to better ways to assess functioning in adults with developmental disorders in the future.


COULD THIS STUDY BE RIGHT FOR YOU?
  • Diagnosed with Down syndrome, Williams syndrome, or Fragile X syndrome
  • Able to read at a 5th grade level

WHAT PARTICIPANTS CAN EXPECT

Participation will take place online via videoconference. You will be asked to complete questionnaires and interviews, and provide feedback. Interviews will be videotaped.


IRB:
  STUDY19080355A - Developing a Gold Standard for Tracking Adult Functional Outcomes in Autism Spectrum Disorder

RESEARCH AREAS:
  Featured Research , Remote Research


NO IN-PERSON VISITS REQUIRED
 
Age Range
AGE:   18 and up

Duration DURATION:  2-3 hours
VISITS:  1-2

Location LOCATION: 
Videoconference
Compensation COMPENSATION: 

$100

Phone Number PHONE NUMBER:
1-866-438-8230
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Phone Number PHONE NUMBER:
1-866-438-8230

MEET THE RESEARCHER


Carla Mazefsky

Carla A. Mazefsky, PhD, is an Associate Professor of Psychiatry at the University of Pittsburgh. Dr. Mazefsky is a graduate of the Virginia Commonwealth University where she received her PhD in Clinical Psychology. She received her postdoctoral training at the Virginia Institute for Psychiatric and Behavioral Genetics. Dr. Mazefsky’s research interests include emotion regulation as a critical mechanism in autism spectrum disorders.




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