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Research (23)

Report from the Prader-Willi Syndrome Mental Health Research Strategy Workshop

March 17, 2015

On March 1-3, 2015, approximately 45 top mental health professionals from around the world gathered in Bethesda, Maryland to discuss behavior and mental health in Prader-Willi syndrome (PWS). Slightly more than half of the group were experienced PWS clinicians or

Brain imaging shows structural differences between the PWS vs. non-PWS brain

March 6, 2015

It is well known that individuals with PWS often exhibit developmental delays and impaired cognition compare to typically developing peers. There is also evidence that those with PWS are at higher risk than the general population for mental health problems

Sleep Apnea In Infants and Children with PWS: Is a Sleep Study On Your "To-Do" List?

July 29, 2014

In a study from The Hospital for Sick Children, the authors recommend that all infants with PWS be screened for sleep disordered breathing (SDB) and receive oxygen treatment as needed. SDB is an area of great concern for the PWS

PWS at the FDA

June 22, 2014

On Tuesday, June 17, key leaders and scientific staff members at the FDA took time out of their busy schedules to learn about the serious challenges of PWS, to hear about our loved ones’ unmet medical needs, and to discuss

PWS iPS cells are helping researchers make breakthroughs

May 29, 2014

One of the exciting breakthroughs in PWS research in recent years has been the development of induced pluripotent stem cells or “iPSCs”. Although there is tremendous excitement among the scientific community about iPSCs, many parents, patients, and advocates still have

The gut-brain connection: bacteria naturally carried in the gut may influence brain chemistry and behavior

March 27, 2014

Those with PWS often battle a variety of gastro-intestinal (GI) issues. Beyond general GI function and quality of life, there is a growing field of research exploring how GI composition and health is intricately connected to other systems in the

An Improved Model of PWS: Generous Donation Allows Development of an Improved Rat Model

February 15, 2014

While the genetic engineering of mouse models has allowed scientists to successfully understand and develop new therapies for many genetic diseases, the PWS mouse models generated so far have not fully mimicked the complexity of human PWS, slowing the progress

Are there benefits to testosterone replacement therapy for adult men with PWS?

October 28, 2013

One well established characteristic of PWS is altered development and function of reproductive systems. This can include hypogonadism; under-development of sexual organs, particularly the testes in males; precocious puberty; and infertility. Of these, hypogonadism, or the production of little to

Has the mystery of early puberty in PWS been solved?

June 9, 2013

Individuals with PWS typically have incomplete sexual development, but, paradoxically, often begin to exhibit signs of puberty much earlier than expected. The incidence of bone fide ‘precocious puberty’ in PWS is not entirely clear, but it is evident that normal

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