New call-to-action
New call-to-action
New call-to-action

What Is the PWS CLIC [2023 Conference Video]

In this video, Caroline Vrana-Diaz, FPWR Research Project Coordinator, discusses the work of the PWS Clinical Investigation Collaborative.

In this 10‑minute video, Caroline Vrana-Diaz, FPWR Research Project Coordinator, explains how the PWS CLIC is helping to improve standards of care for people with Prader-Willi syndrome.

Click below to watch the video. If you're short on time, scroll down for timestamps to find the portions you're most interested in.

Presentation Summary With Timestamps

0:00 What Is the CLIC?

  • PWS CLIC is the Clinical Investigation Collaborative.
  • Its mission is to improve the quality of clinical research and medical care for people with Prader-Willi syndrome across the life span through collaborative investigation and research to support evidence-based care.
  • PWS CLIC started two years ago and currently has 25 sites in the United States and three in Canada.
  • New sites continue to be added.

0:32 How Is the PWS CLIC Improving Standards of Care?

  • One of the main initiatives is to work with a company called Studytrax to capture data from clinical trials, surveys, and patient registries.
  • The goal is to create a shared central repository for deidentified clinical data on PWS patients.
  • The repository will be an additional resource for answering clinical questions in treatment.
  • The repository data can be combined with data in the PWS Global Registry.
  • This will be a powerful tool for optimizing clinical care in PWS.

2:50 Feeding Tube Use and Complications in PWS

  • Dr. Sani Roy at Cook Children’s in Texas and Dr Jessica Duis at Children’s Hospital of Colorado are conducting a survey of feeding tube use with PWS patients.
  • Major questions addressed in the survey:
    • How often are feeding tubes placed?
    • What’s the primary reason for tube placement?
    • What are common complications, and do they differ by tube type?
  • No one had previously asked these questions in a standardized way.
  • Both researchers are members of the PWS CLIC, which presented the opportunity to use the CLIC to address these questions.
  • Survey report is in prepublication review, and full results should hopefully be available soon.

3:42 Results of Feeding Tube Project

  • About 350 people answered the survey. 
  • Seventy percent of respondents had only an NG (nasogastric) tube, 25% had an NG tube and a G (gastric) tube, and 5% percent had only a G tube.
  • The main reasons for tube use were feeding difficulties and poor weight gain.
  • Another reason given for tube use was aspiration or breathing difficulties in feeding.
  • About 20% of G tube use was due to aspiration or breathing difficulties in feeding, whereas only 5% of NG tube use was for these reasons.
  • NG tubes were normally removed by the age of six months.
  • G tubes were normally removed by age two years.
  • The rate of complications was higher with G tubes than with NG tubes.
  • Caregivers reported both tube types had positive effects on quality of life.
  • Generally it appears that feeding difficulties are addressed well with NG tube use.
  • G tube placement requires surgery and thus involves additional surgery-related risks.
  • Thanks go to all survey participants for providing new data on the short- and long-term complications of feeding tubes.
  • The data will provide CLIC members with an understanding of current practices around the country.
  • Do we need to be changing standard practices?
  • Neonatologists often promote G tube use; the survey data may enable the PWS community to promote NG tube use in more cases.

7:35 Q & A

  • Will there be a central location where doctors can access these findings?
  • The findings will be published in a medical journal, but FPWR will also push out the information through blogs and social media.

FPWR Enewsletter

Topics: Clinical Issues, Research

Susan Hedstrom


Susan Hedstrom is the Executive Director for the Foundation for Prader-Willi Research. Passionate about finding treatments for PWS, Susan joined FPWR in 2009 shortly after her son, Jayden, was diagnosed with Prader-Willi Syndrome. Rather than accepting PWS as it has been defined, Susan has chosen to work with a team of pro-active and tireless individuals to accelerate PWS research in order to change the future of PWS. Inspired by her first FPWR conference and the team of researchers that were working to find answers for the syndrome, she joined the FPWR team in 2010 and led the development of the One SMALL Step walk program. Under Susan’s leadership, over $15 million has been raised for PWS related research.