Welcome Aaminar Khan

We are delighted to have Aaminar involved and look forward to working with her to help raise awareness of Fragile X and support our wider community.

I am currently a first-year PhD student at the University of Warwick with my research focus “Exploring Quality of Life in Individuals with Fragile X Syndrome”. Quality of life is a broad concept that extends beyond physical health. Exploring quality of life leads to understanding what matters most to an individual and the factors that contribute to their wellbeing, happiness, and ability to live a fulfilling everyday life. Factors range from emotional wellbeing, mental health, social participation, relationships, and finance as a few examples. Although this is an important topic, quality of life is defined and measured inconsistently across research, particularly in populations with genetic syndromes and intellectual disability. Despite around 1.74% of the global population being diagnosed with an intellectual disability and a significant proportion of these cases having a genetic cause, most research treats this group as a single population. This limits understanding of the specific needs and experiences of individuals with different genetic syndromes.

My research addresses this gap by focusing specifically on Fragile X syndrome which is one of the most common genetic causes of intellectual disability. The PhD uses a mixed-methods design, combining a systematic review - that explores quality of life across genetic syndromes associated with intellectual disability -, quantitative analysis of a quality of life measure across different genetic syndromes and fragile X syndrome from a large survey, and qualitative study using talking mats to gather first-hand perspectives from individuals with Fragile X syndrome. By integrating these approaches, my research aims to identify key factors associated with quality of life and highlight differences between genetic conditions. The overall goal is to improve understanding of what influences quality of life in this population and to provide findings that can inform support within health, education, and social care services.

I am looking forward to being apart of the Fragile X society and hope to contribute meaningful research to this field.