The PWS-Clinical Investigation Collaborative (PWS-CLIC), a network of PWS clinical experts formally established in 2021 and supported by FPWR, held their annual meeting in Atlanta, Georgia, in conjunction with the FPWR Research Symposium and Family Conference, on September 27th, 2024. We had 15 CLIC members attend in person and 9 members attend virtually.
This network has expanded over the past two years and now includes 25 clinical sites in the United States and 3 clinical sites in Canada (see the list of participating clinical sites here). The annual, in-person meeting is an important opportunity for these PWS experts to get together, share their clinical expertise, and make plans to advance clinical research that will improve the care of all individuals with PWS.
First on the agenda was a review of the PWS-CLIC shared database, which will allow investigators from multiple clinical sites to pool data from their patients to answer questions about optimizing medical care. Currently, four sites are contributing data to the PWS-CLIC database, and several additional sites are in the preparatory phase of joining the database. This year’s annual meeting also included updates on the activities of PWS-CLIC committees, a new survey regarding clinician attitudes on hypogonadism and sex steroid replacement in PWS, an FPWR-funded study for the PWS-CLIC on sleep studies and growth hormone administration in PWS, and a new project for the PWS-CLIC called RareCAP.
RareCAP is an online repository of clinical protocols for the care of rare disease patients in a wide range of settings, and the protocols can be viewed and used by both specialists and caregivers. The link to the Prader-Willi syndrome disease protocol can be found here! The PWS-CLIC has just started adding protocols to RareCAP (including new and emerging GI complaints, blood clots, and feeding tubes), and more will be added soon. We expect that RareCAP will be a valuable resource for families as well as clinicians who don’t routinely care for individuals with PWS.
Finally, PWS-CLIC members began planning for the clinical workshops that will take place during the 2025 joint FPWR, PWSA|USA, and IPWSO conference next year on June 24-28, 2025, in Phoenix, AZ. We truly appreciate PWS-CLIC members taking time from their busy schedules to work together to improve the care of our loved ones with PWS!
