KU leads long-running nationwide Fragile X study focused on family experiences and child development
When University of Kansas Life Span Institute researchers board a plane to visit families who are enrolled in their Fragile X study, they bring more than a suitcase with clothes. They may lug building blocks, a recipe, or a book about constructing castles, as well as video and photography equipment.
Over the years, the items have varied, and the technology has advanced, but families have been the consistent throughline for more than two decades of KU research. Today the study based at the Fragile X Lab includes a cohort of 46 families across the country participating in what is thought to be the longest-running longitudinal study of Fragile X syndrome. Fragile X syndrome (FXS)is the leading cause of inherited intellectual disability, and while less known to the public, FXS is second only to Down syndrome as the most common genetic cause of intellectual disability.
Led by Professor Nancy Brady, who launched the research with Professor Steve Warren in 2004, the Fragile X project received an additional $2.25 million in 2023 from the National Institutes of Health to fund the project for an additional five years, bringing the total funding for the project to $6.1 million. The additional funding expands the project’s focus on young adults. The study is seeking individuals ages 18-22 years old who have Fragile X syndrome, and their parents. It will identify characteristics associated with successful transition outcomes for young adults with Fragile X syndrome, and further investigate mothers' mental health and functioning.
The annual visits with families spread across 23 states have helped KU researchers expand what is known about Fragile X syndrome and familial characteristics and behaviors. Longtime participants in the study include Ohio resident Judith Maloney and her family. Her adult sons, Liam and Nolan, were just newly diagnosed toddlers when the study began. Looking back, Maloney said, “I didn't know I was participating in something that was going to last 22 years.”