https://www.fpwr.org/the-global-pws-registry-empowering-families-advancing-research
The Global PWS Registry: Empowering Families, Advancing Research
The Global PWS Registry is essential to advancing research. Here’s how to get involved, and what participation means to the future of PWS.
global pws registryempowering familiesadvancing research
https://www.fpwr.org/blog/pws-registry-data-vomiting-and-choking-in-pws-infographic
PWS Registry Data: Vomiting and Choking in PWS [INFOGRAPHIC]
Surveys of participants in the Global PWS Registry are challenging past assumptions about inability to vomit as well as shedding light on incidence of choking.
pws registrydatavomitingchokinginfographic
https://www.fpwr.org/blog/pws-registry-data-tube-feeding-infographic
PWS Registry Data: Tube Feeding [INFOGRAPHIC]
Data from the Global PWS Registry shows that more than 75% of registry participants required a feeding tube in infancy.
pws registrytube feedingdatainfographic
https://www.fpwr.org/blog/pws-registry-data-dermatology-infographic
PWS Registry Data: Dermatology
Data from the Global PWS Registry shows that other than skin picking, the most commonly reported skin related issues are eczema, cellulitis, and edema.
pws registrydatadermatology
https://www.fpwr.org/blog/pws-registry-data-gi-issues-in-prader-willi-syndrome-infographic
PWS Registry Data: GI Issues in Prader-Willi Syndrome [INFOGRAPHIC]
Findings include: 13% of Global PWS Registry participants were diagnosed with gastroparesis, with the prevalence highest in the 11-15 age group, 19%.
pws registrydata
https://www.fpwr.org/blog/pws-registry-data-friendships-in-pws
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.
pws registrydatafriendships
https://www.fpwr.org/blog/pws-registry-data-thyroid-issues-in-pws-infographic
PWS Registry Data: Thyroid Issues in PWS [INFOGRAPHIC]
Data from the Global PWS Registry shows that 20% report having a thyroid issue, with the majority of that 20% reporting hypothyroidism, low thyroid levels.
pws registrythyroid issuesdatainfographic
https://www.fpwr.org/blog/pws-registry-data-anxiety-in-pws-infographic
PWS Registry Data: Anxiety In PWS [INFOGRAPHIC]
Surveys are revealing a difference in the incidence of anxiety in PWS, between people with the UPD subtype and those with deletion. This new data comes to...
pws registrydata anxietyinfographic