Development

What are the goals of this study? 

The purpose of the study is to delineate the development of language, cognition, personality, literacy and mathematics skills, and adaptive behavior from very early childhood through adulthood in individuals who have WS or Dup7. The research also aims to determine the predictors of specific aspects of development (e.g., word reading ability, language ability, spatial ability) for individuals with WS or Dup7. In the long term, findings are expected not only to contribute to theories of development but also to provide a solid basis for the design of interventions to facilitate the acquisition of language, literacy, math skills, and adaptive behavior skills for individuals with WS or Dup7.

 

Who can be a part of this research study?

People with Williams Syndrome, duplication of the WS region (Dup7), small deletions or duplications in the WS region, and individuals who have characteristics that overlap with those associated with WS or Dup7.

 

What will you be asked to do?

  • Attend in-person visits:
    • Annually or twice a year for infants and toddlers
    • Annually for young children
    • Every 2-3 years for older children and adolescents
    • Every 3-5 years for adults

We expect that your participation in this research will be ongoing unless you withdraw.

  • The length of the research visit varies based on age:
    • For children < 4 years old and for adults: visit will be 1 day
    • For children 4 – 17 years old: visit will be 1½ - 2 day
  • Parents or caregivers will be asked to complete questionnaires and interviews regarding the personality, behavioral characteristics, and adaptive skills of the participant and (for child participants) the sibling closest in age.
  • Participants will be asked to complete standardized assessments of cognition and language administered by specially trained researchers:
    • For children < 4 years old, the assessment will take about 2-3 hours
    • Beginning at age 4, the assessment may take as long as 6-10 hours (excluding breaks). The assessment may be conducted over two days to accommodate the participant’s attention span. Breaks will be provided as needed.
  • Participate in researcher-designed activities administered to measure spontaneous language abilities and mastery motivation. For young children, this may include a parent-child play session

 

What are the benefits of taking part in this research study?

  • Parents who have participated in similar studies often report that as a result of participation, they become more aware of their child’s abilities and the progress that their child is making.
  • The knowledge gained from this research may help in designing interventions and educational plans specifically for children with WS, Dup7, and more generally for children with developmental delay, intellectual disabilities, or learning difficulties.
  • The information collected may or may not benefit you and your child directly. The information learned may be helpful to others, as it might help us better understand the processes involved in language, cognitive, literacy and math, personality, and behavioral development.

 

Will I be paid for taking part in this study?

  • No

 

I'm interested! How do I participate?

If you have any questions or would like to join the research study, please contact: ace-ws-research@pennmedicine.upenn.edu with “Research” in the subject line or call 888-722-3497 for more information!