Social Outcomes in Adults with RASopathies: The SOAR Study
Awardee: Jonathan Payne
Institution: Murdoch Children's Research Institute
Grant Amount: $60,755.00
Funding Period: February 1, 2024 - January 31, 2025
Summary:
Psychosocial difficulties and increased mental ill-health have been described in some RASopathies, however the literature lacks a systemic account of these difficulties, especially in adulthood. Understanding the nature, severity and impact of mental health and psychosocial adversity in adults with a RASopathy will be critical to inform clinical practice and to guide intervention strategies. The overall goal of the SOAR study is to take a holistic approach to evaluating a broad road range of psychosocial outcomes in adults with a RASopathy, including mental health, social integration, quality of life and daily living skills. We will also examine how these outcomes relate to demographic and personal variables such as employment, housing arrangements, family composition, and health status. SOAR will be a survey-based study and include over 300 adults with a RASopathy across Australia and the UK. By comprehensively characterizing the psychosocial outcomes in adults with RASopathies, this project will help shape clinical services and management of individuals with RASopathies.