Attention Fragile X parents: here’s an easy survey study you can join. No travel needed because it’s online! The study’s goal is to help design future Fragile X clinical trials more effectively and to understand which treatments are likely to help which people.
Analysis of Developmental Brain Dysfunction (DBD) in Families with Fragile X Syndrome
Brenda Finucane, MS, and Margaret King, PhD
Geisinger Health System Autism and Developmental Medicine Institute, Lewisburg, PA
Funded by FRAXA Research Foundation ($45,000 in 2014)
Individuals with fragile X syndrome (FXS) have developmental diagnoses across a wide range of severity. We want to understand why there is such variability in each child with FXS: why one affected child has autism while another does not; why two brothers with FXS have significant IQ differences; etc. We think that this variability may be due in part to an individual’s overall genetic background, not just the FMR1 gene mutation. We plan to examine the impact of a person’s family background by obtaining detailed family trees (called pedigrees) of individuals with FXS to look at learning and behavior patterns on both sides of their families. We will also directly measure behavioral characteristics of individuals with FXS and his or her parents and siblings using online surveys and assessments that can be done from your home computer.
For more information, please visit: http://geisingeradmi.org/