Projects Archive - Foundation for Prader-Willi Research | Mental Health

Under the guidance of our Scientific Advisory Board through a carefully managed grants process, FPWR selects research projects based on the collaborative input of researchers and parents, choosing projects that are both scientifically meritorious and highly relevant for individuals with PWS and their families.

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Obsessive-compulsive and psychotic-like behaviors across PWS subtypes: Developmental considerations

Funded Year: 2024

Dr. Evans has previously developed a well-validated measure of rigidity and obsessive-compulsive behaviors, as well as behaviors associated with psychosis. Here, he will work with the Global PWS Registry team to recruit families to complete these assessments three times over a year and see if they are well-suited for the PWS population. These...

Improving social functioning in Prader-willi syndrome (year 2)

Funded Year: 2018

Social isolation and impaired social cognition underpins loneliness, depression and anxiety, contributes to poor health and reduced longevity. They also are associated with such cognitive consequences as impaired executive functioning, cognitive decline, a bias towards negative, depressive thinking, and oversensitivity to perceived social...

A mindfulness-based intervention for temper outbursts in Prader–Willi syndrome

Funded Year: 2017

Temper outbursts are one of the most commonly reported behavior problems of children, adolescents and adults with PWS. Outbursts cause increased stress for families and costs for the community. Despite this, there is currently no known treatment. Meditation on the Soles of the Feet (SoF) is a mindfulness-based intervention designed specifically to...

A post-mortem study of von Economo neurons in the frontal cortex of brains of persons with PWS (year 2)

Funded Year: 2017

Although PWS is best known for hypothalamic obesity and hyperphagia, the cognitive and behavioral issues are the most challenging for families. Previous neuroanatomical studies in PWS have examined cells in the hypothalamus. To date, no data are available on the cellular structure of the brain in PWS in the frontal lobe where executive function...

Proof of concept study of vagus nerve stimulation from an external device in PWS (year 2)

Funded Year: 2017

The hypothesis set out in our original application is that t-VNS given over time and following a protocol established for its use in epilepsy, will prevent the prolonged and debilitating temper outbursts and associated emotional dysregulation that characteristically affect people with PWS. We further propose that any improvements in behavior are...

Improving social functioning in Prader-Willi syndrome

Funded Year: 2016

People with intellectual or developmental disabilities, including Prader-Willi syndrome (PWS), are at heightened risk for social exclusion and isolation. This underpins loneliness, depression and anxiety, contributes to poor health and reduced longevity. This project will recruit 50 young adults with PWS into an intensive, 10-week group...

Predictors of psychosis in Prader Willi Syndrome

Funded Year: 2016

There is increasing evidence that Prader-Willi Syndrome is associated with high rates of psychosis, a serious mental disorder that profoundly disrupts thought and emotion. However, little is known about the early or ‘prodromal’ phase of illness and the risk factors that predict the emergence of psychosis in PWS patients. This is a critical gap in...

Evaluating the Parent-focused Remote Education To Enhance Development (PRETEND) Program in PWS

Funded Year: 2015

This project centers on better understanding the social-cognitive characteristics of Prader-Willi syndrome (PWS) in early childhood and providing education and training to parents of children with PWS to optimize learning and joint engagement between parent and child. There are two goals of this research:

Unraveling the developmental neurobiology of PWS: a cross-sectional brain-imaging study (year 2)

Funded Year: 2014

Prader-Willi Syndrome (PWS) is a rare disorder, sharing common genes with autism and schizophrenia; patients with PWS are at a high risk of developing psychiatric illnesses and behavioral problems, however, the underlying neurobiology that places them at-risk is yet unknown. Here we propose a cross-sectional, multi-faceted brain imaging study in...

Unraveling the developmental neurobiology of PWS: a cross-sectional brain imaging study

Funded Year: 2013

Prader-Willi Syndrome (PWS) is a rare disorder, sharing common genes with autism and schizophrenia; patients with PWS are at very high risk of developing severe psychiatric illnesses and behavioral problems, however, the underlying neurobiology that places them at-risk is yet unknown. Here we propose a cross-sectional, multi-faceted brain imaging...

The risk of early onset Alzheimer's disease in Prader-Willi syndrome

Funded Year: 2009

Alzheimer's disease (AD) is well-known as a condition of old age, prevalence rising with age from about 70 years. However, some groups appear to be at risk from a much earlier age, for example people with Down's syndrome. Recently, in pathological studies of people with Prader-Willi syndrome (PWS) who died aged over 40 years, signs of AD have been...

Behavioral treatment of obsessive-compulsive symptoms

Funded Year: 2009

Obsessive-compulsive (OC) symptoms are often present among youth with Prader-Willi Syndrome (PWS). They are also associated with considerable problems in the daily functioning of the child and his/her family. Although medication and behavioral treatments exist that target OC symptoms among youth without PWS, these treatments have not been...

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