Family adaptation to Fragile X syndrome

This is a current project.

Description

The aims of this project are to describe and explain variation in the extent to which parents of children with Fragile X syndrome:

  • construct environments that promote cognitive, language, academic, and adaptive development in their children with FXS
  • promote socio-emotional development and regulate challenging behaviors in their children with FX
  • experience a positive quality of life, are hopeful about the future, and are protected from adverse mental health outcome
Project Administration

Steve Warren, principal investigator

Nancy Brady, co-principal investigator

Project Contact

Steve Warren, Ph.D.
Vice Provost for Research and Graduate Studies
sfwarren@ku.edu
KU Center for Research and Graduate Studies
Youngberg Hall, rm 201
2385 Irving Hill Road
Lawrence, KS 66045
785-864-7298
785-864-5272 (fax)

In collaboration with :

University of North Carolina at Chapel Hill

Funded by:

National Institute of Child Health and Human Development (NICHD)

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Project Website
Publications and Presentations

For a complete list of citations and links to full-text sources, click here.

Participant Recruiting

Families interested in receiving notification about research projects recruiting participants with FXS may enroll in the University of North Carolina's Research Registry. This unique registry is a database of individuals who have expressed interest in becoming involved in research projects. It is an organized and confidential way of linking families and researchers. Visit the web site for more information and to see the on-line registration form or call the Research Registry office toll-free (866) 744-7879.

Send corrections/comments/questions to lifespan@ku.edu


The University of Kansas prohibits discrimination on the basis of race, color, ethnicity, religion, sex, national origin, age, ancestry, disability, status as a veteran, sexual orientation, marital status, parental status, gender identity, gender expression and genetic information in the University’s programs and activities. The following person has been designated to handle inquiries regarding the non-discrimination policies: Director of the Office of Institutional Opportunity and Access, IOA@ku.edu, 1246 W. Campus Road, Room 153A, Lawrence, KS, 66045, (785)864-6414, 711 TTY.