Foundation for Prader-Willi Blog | Global PWS Registry (2)

PWS Registry Data: Thyroid Issues in PWS [INFOGRAPHIC]

When it comes to hormone imbalances in Prader-Willi syndrome (PWS), growth hormone deficiency and growth hormone therapy are at the forefront of the conversation. However, the levels of several other hormones are also more frequently different in PWS...

March 22, 2021 Read More

Topics: Research, Global PWS Registry

The Global PWS Registry Needs YOU to Update Your Surveys!

2021 brings new opportunities to learn even more about PWS and improve the health of those living with PWS. De-identified data from the Global PWS Registry is actively being used to help PWS physicians understand medical problems in PWS, provide scie...

January 8, 2021 Read More

Topics: Global PWS Registry

PWS Registry Data: Impact of COVID-19 on PWS Families [INFOGRAPHICS]

Originally published in August 2020, this blog has been updated with significant new data. The Global PWS Registry launched a survey this summer to capture the impact of COVID-19 on PWS families, and how our community is navigating this unprecedented...

November 23, 2020 Read More

Topics: Research, Global PWS Registry

PWS Registry Data: Vision [INFOGRAPHIC]

Although many symptoms of PWS are difficult to treat, impaired vision is a place where corrective lenses and/or surgery can make huge improvements. Data from the Global PWS Registry shows that the most common vision issues in PWS are nearsightedness,...

April 15, 2020 Read More

Topics: Research, Global PWS Registry

PWS Registry Data: Tube Feeding [INFOGRAPHIC]

For parents of an infant with PWS, one of the first major challenges they face is feeding difficulties and having their baby consume enough nutrition and calories. Data from the Global PWS Registry shows that more than 75% of registry participants re...

February 25, 2020 Read More

Topics: Research, Global PWS Registry

PWS Registry Data: Friendships in PWS

Most people with PWS are social and enjoy spending time with family and friends. However, making and keeping friends can be difficult for people with PWS. Because of food issues, people with PWS often need supervision and monitoring, which can make i...

March 12, 2019 Read More

Topics: Research, Global PWS Registry

PWS Registry Data: 88% Have Received Speech Therapy [INFOGRAPHIC]

Speech requires a complex combination of cognitive processing to quickly find and combine the right words, paired with the physical process of producing sounds. Since PWS impacts a variety of pathways that contribute to speech and sound development, ...

July 18, 2018 Read More

Topics: Research, Global PWS Registry

PWS Registry Data: Anxiety In PWS

Anxiousness is a common challenge for our loved ones with PWS. Within the Global PWS Registry, caregiver-reported anxiety is an issue for 61% of individuals ages 10-14, and rises to almost 75% for individuals 15 and older.

May 8, 2018 Read More

Topics: Research, Global PWS Registry

PWS Registry Data: Vomiting and Choking in PWS [INFOGRAPHIC]

The inability to vomit has previously been cited as a characteristic of Prader-Willi syndrome. While there is a reduction in vomiting as compared to neuro-typical peers, 54% of participants in the Global PWS Registry have vomited (n=304) indicating t...

February 22, 2018 Read More

Topics: Research, Global PWS Registry

Foundation for Prader-Willi Blog | Global PWS Registry (2)

Categories

PWS Registry Data: Thyroid Issues in PWS [INFOGRAPHIC]

The Global PWS Registry Needs YOU to Update Your Surveys!

PWS Registry Data: Impact of COVID-19 on PWS Families [INFOGRAPHICS]

PWS Registry Data: Vision [INFOGRAPHIC]

PWS Registry Data: Tube Feeding [INFOGRAPHIC]

PWS Registry Data: Friendships in PWS

PWS Registry Data: 88% Have Received Speech Therapy [INFOGRAPHIC]

PWS Registry Data: Anxiety In PWS

PWS Registry Data: Vomiting and Choking in PWS [INFOGRAPHIC]

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