This grant funds a 5-year continuation of a Fragile X Syndrome (FXS) Research Center, the focus of which is on family adaptation to FXS (Dr. Don Bailey, Principal Investigator). Thirteen investigators from eleven disciplines (anthropology, developmental psychology, educational psychology, clinical psychology, forensic medicine, social work, law, medical genetics, special education, speech and hearing sciences, and psychiatry), based at three Mental Retardation and Developmental Disabilities Research Centers (University of North Carolina at Chapel Hill, University of Kansas, University of Wisconsin - Madison) and in partnership with RTI International, are collaborating on an integrated and longitudinal set of three studies: Project 1: Maternal Responsivity and the Development of Children with FXS (Dr. Steve Warren and Dr. Nancy Brady, University of Kansas); Project 2: Adaptations of Families of Adolescents and Adults with FXS (Dr. Marsha Seltzer and Dr. Jan Greenberg, University of Wisconsin-Madison); and Project 3: Family Adaptation to Newborn Screening for FXS (Dr. Don Bailey and Dr. Debra Skinner, UNC-Chapel Hill). The projects are supported by one existing MRDDRC core (Design and Statistical Computing) and one new core (Ethnographic and Qualitative Methods). Center investigators are collecting data using a range of methods, including biologic samples, direct observation, speech samples, daily diaries, surveys, and semi-structured interviews. A range of mixed methods are used to analyze these data.
National Institute of Child Health and Human Development
07/01/2003 to 06/30/2014