Neurobehavioural Evaluation Tool (NET) Study
Research type
Research Study
Full title
Development and Validation of an online Neurobehavioral Evaluation Tool (NET) for Neurodevelopmental Disorders
IRAS ID
315835
Contact name
Katherine Lachlan
Contact email
Sponsor organisation
John Carroll University
Duration of Study in the UK
1 years, 5 months, 27 days
Research summary
PTEN Hamartoma Tumour Syndrome (PHTS) is a genetic condition, which predisposes to a broad range of issues, including certain cancers, but also neurodevelopmental disorders, which can include developmental delay and autism. It is not possible to predict which of these issues a person with PHTS will face.
Genetic mutations alter the way in which cells and organs function. As understanding of these underlying mechanisms increases, treatments for specific rare conditions become a realistic possibility. Indeed, a trial has already taken place to establish if repurposing a medicine, known to act in the PTEN cellular pathway, could improve developmental and behavioural outcomes in people with PHTS.
The measures currently used to evaluate behaviour and functioning were not designed specifically for PHTS and did not include PHTS patients in the measure development process. Current “standard” assessment tools present an unnecessary burden for the caregiver completing the survey scales; they include questions irrelevant to portions of the PHTS population and are time consuming to complete.
This project attempts to fill this gap by providing an easy, quick, universal assessment tool called the Neurobehavioral Evaluation Tool (or NET for short) that can be completed online, within the comfort of home. The measure will be designed to assess a variety of skills and difficulties including behavioural symptoms, cognitive abilities, and daily living skills. Ultimately, it is hoped that the NET will improve research and clinical practice by making clinical evaluations and study participation easier on patients and families.This study represents recruitment of UK participants as part of a study conducted in the US. The US team will have access to, and analyse, the data from the survey and performance assessments for all study participants recruited in both the US and UK
REC name
South Central - Hampshire A Research Ethics Committee
REC reference
22/SC/0366
Date of REC Opinion
22 Dec 2022
REC opinion
Further Information Favourable Opinion