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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 light thanks to surveys completed by participants in the Global PWS Registry.

Anxiety is a common challenge for our loved ones with PWS. Recently, we reviewed responses in the Global PWS Registry related to anxiety. According to registry respondents, anxiety is an issue for 48% of individual with PWS ages 10 and up.

Interestingly, while anxiety prevalence seems to be similar between males and females, there does appear to be a marked increase in anxiety among individuals with the UPD subtype compared to those with deletion. In this survey, a total of 47 patients responded (22 having UPD and 25 having deletion). 73% of UPD patients reported anxiety compared to only 32% of deletion patients.

While the number of respondents is low (please complete your survey on Behavior and Psychology to help us strengthen this data!!), it suggests that those with PWS by UPD may be particularly vulnerable to problems with anxiety, highlighting another aspect of mental health that may vary between genetic subtype in PWS. Understanding why those with PWS by UPD may be more susceptible to anxiety, and determining what therapies (medication or behavioral) may be effective for treating anxiety in PWS - and whether the effectiveness may be influenced by genetic subtype are active areas of PWS research. Data from the Global PWS Registry will continue to inform this work, and help us understand which therapies are helping families.

For guidance on how to enroll in the Global PWS Registry please download the Instruction Guide for Getting Started with the PWS Registry. Already enrolled and want to update your surveys? Download the Guide to Updating Your Surveys.


PWS global registry

Topics: Research

Jessica Bohonowych


Jessica Bohonowych is a graduate of Duke University, and holds a PhD in Pharmacology and Toxicology at the University of California, Davis. Incorporating her research background, knowledge of pharmacology and drug development, and teaching experience, Jessica works with Theresa Strong in managing FPWR’s grant portfolio, communicating research results and breakthroughs to our community, aiding in special projects such as the Clinical Trials Initiative and Molecular Resource Center, and is heading the development of the Global PWS Registry.