Icon-E: Initial Concerns Extended
children, development, abnormalities
The project overview
Fragile X Syndrome (FXS) is characterized by a number of neurological and neurobehavioral abnormalities. Compared to other genetic disorders, such as Down syndrome, a lack of distinct prenatal, perinatal or postnatal symptoms hinder the early diagnosis of FXS. FXS is often only diagnosed after stringent clinical observations, and usually beyond toddlerhood.
Yet, the average age of diagnosis of FXS is around three years. The FWF base project “An interdisciplinary view: The early phenotype of Fragile X syndrome” (P25241) focused on early signs of FXS through retrospective video analysis of home video material during the first two years of life of children, who were later diagnosed with FXS. This citizen science project aims to characterize and investigate the early development of children with FXS by recruiting the expertise of professional day care providers.
How to participate?
The project cordially invites citizen scientists to participate in two analysis sessions. Participants will be asked to observe and analyse home video clips with respect to the presentation of both typical and atypical behaviours; for example: How is the child interacting with parents or siblings? How are fine motor skills? Is there something peculiar about their behaviour?
What happens to the contributions of citizen scientists?
The participant's experience with child care might help us to more accurately characterise the early signs of FXS and may potentially contribute to the earlier detection of FXS.
Participating and supporting institutions
Mag.a Iris Tomantschger