What We Do
Despite over 1 million individuals in the United States remaining minimally-speaking throughout their lifetimes, little is known about communication from minimally-speaking individuals. Communication difficulties are common for individuals with complex neurodevelopment disorders (NDDs), such as Phelan McDermid Syndrome (PMS), PTEN Hamartoma Tumor Syndrome (PHTS), and Tuberous Sclerosis Complex (TSC). The TALK Study is designed for individuals who have limited communication abilities and have been diagnosed with PMS, PHTS, or TSC. The goal of the TALK is to better understand how individuals with severe NDDs communicate.
Our Plan
To better understand communication among individuals with NDDs, TALK, we will pilot a novel, remotely-administered natural communication sampling paradigm called ROSCO (Rapid Online Samples of Communication) with PMS, PHTS, and TSC individuals. This study will investigate the feasibility of using a remote protocol to capture and quantify broad expressive communication – including non-speech vocalization, gestures, and augmentative and alternative communication (ACC) usage – from NDD individuals, especially those with limited speech.
Lab / Research Overview
Phelan-McDermid Syndrome
PMS each of these spaces to summarize your work and provide updates or highlight milestones your team has made. If you want to give your readers more context or allow them to read about the project in more depth, link to a publication or another page.
PTEN Hamartoma Syndrome
PTEN each of these spaces to summarize your work and provide updates or highlight milestones your team has made. If you want to give your readers more context or allow them to read about the project in more depth, link to a publication or another page.
Tuberous Sclerosis Complex
TSC each of these spaces to summarize your work and provide updates or highlight milestones your team has made. If you want to give your readers more context or allow them to read about the project in more depth, link to a publication or another page
