PWS Clinical Investigation Collaborative

The Prader-Willi Syndrome Clinical Investigation Collaborative (CLIC) is a nationwide network of expert clinicians dedicated to improving care for and advancing clinical research for people with PWS.

With more than 35 participating sites across the United States and Canada, the PWS-CLIC connects families and clinicians with providers who have experience caring for individuals with PWS and a shared commitment to learning from every patient.

The goal of the PWS-CLIC is simple but powerful: improve outcomes for people with PWS across the lifespan by strengthening clinical care today and accelerating the development of better treatments for tomorrow.

The PWS-CLIC focuses on improving clinical care and building knowledge that can benefit the broader PWS community.

The collaborative:

• Shares clinical expertise among healthcare professionals who care for people with PWS
• Identifies important questions about PWS care and health
• Collects and studies clinical data from participating sites
• Conducts research to better understand health concerns and treatment outcomes
• Builds evidence that can inform clinical practice and future research

For families, the PWS-CLIC offers access to knowledgeable providers who understand the complexities of PWS across the lifespan. For clinicians, it offers a collaborative professional network and the infrastructure needed to ask—and answer—important clinical questions.

If you're looking for a healthcare provider with experience caring for people with PWS, you may wish to consider a PWS-CLIC participating clinical site when one is available in your area.

Participating clinicians are connected to a network of PWS experts and have experience caring for people with the syndrome.

Please note: Not all PWS-CLIC physicians are accepting new patients. PWS-CLIC participation does not guarantee that a physician or clinical site is accepting new patients. Contact the clinical site directly to ask about availability and PWS services.

One advantage of a collaborative like PWS-CLIC is the ability to pool the expertise and clinical experience of doctors across the North America. Through the secure, cloud-based PWS-CLIC Database, participating clinicians contribute de-identified clinical information about people with PWS, allowing them to compare experiences, identify trends, and study which approaches to care are most effective.

When families participate, they help ensure the database reflects the diversity of the PWS community and strengthens the evidence available to clinicians caring for people with PWS.

The clinician-reported information collected through PWS-CLIC complements the caregiver-reported data in the Global PWS Registry, providing a more complete picture of health, medical management, and quality of life. Families who participate in the CLIC database are encouraged to link their CLIC data with their Global PWS Registry record, further strengthening the value of both efforts.

A core strength of the CLIC is it's ability to translate shared clinical experience into meaningful insights that improve care. By pooling data from clinics across the country, the CLIC is beginning to answer important clinical questions that individual centers cannot address on their own.