PWSA Blog

Help PWS experts learn more about feeding tube use in PWS

The information below was provided by the Global PWS Registry

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We know feeding tubes are often used in infancy for our loved ones with PWS who have difficulty feeding in the early months after birth.  If your child used a feeding tube, we are asking you to spend 10 minutes today completing the new ‘Feeding Tube Use and Complications’ survey.  This survey will help PWS experts in the newly formed PWS-CLIC (PWS Clinical Investigation Collaborative) learn more about how often feeding tubes are used in the PWS population, complications from feeding tube use, and duration of use.  The mission of the PWS-CLIC is to improve the quality of clinical research and medical care for people with Prader-Willi syndrome (PWS) across the lifespan through collaborative investigation and research to support evidence-based care.  This project on feeding tubes is the first of several new projects to be launched.

You can contribute to this research easily from the comfort of your home.  Simply login to your account in the Global PWS Registry www.pwsregistry.org.  To complete this survey, you must have first completed the ‘Diagnosis’ and ‘Birth History’ surveys.  If you have already done this and indicated your loved one has a history of using a feeding tube you are ready to complete the new ‘Feeding Tube Use and Complications’ survey.

If you need help setting up or reactivating your account, or if you have any questions, email us: info@pwsregistry.org or info@pathforpws.com

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