PWS Clinical Investigation Collaborative

The Prader-Willi Syndrome Clinical Investigation Collaborative (PWS-CLIC) is a nationwide network of expert clinicians dedicated to improving care for and advancing clinical research for people with Prader-Willi syndrome (PWS). With 36 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 aims to improve the quality of medical care and clinical research for individuals with PWS through collaborative investigation and data-driven practices. By connecting experts across multiple medical disciplines, the collaborative works to identify key clinical questions, share insights and observations, and generate evidence that supports informed, consistent, and effective care.

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.

Learning From Every Patient: The PWS-CLIC Database

One of the most important ways the PWS-CLIC works toward its mission is by learning from every patient, so care can be improved for all. A deeper understanding of the natural history of PWS—the typical patterns, variations, and challenges experienced across the lifespan—helps clinicians anticipate medical concerns earlier and work to reduce their frequency and severity.

To do this effectively, clinicians need the ability to “compare notes,” identify data trends, and understand how often certain complications occur across a large, representative PWS population. To support this, the PWS-CLIC, in partnership with FPWR, launched a PWS-CLIC Database to complement the caregiver-entered data in the Global PWS Registry.

The CLIC database is a secure, cloud-based electronic data capture system where CLIC clinicians enter de-identified clinical data (with all personal identifiers removed) for individuals with PWS. The database allows experts to:

Learn from real-world experiences of individuals with PWS
Identify trends and best practices in medical care
Strengthen evidence-based decision-making
Better understand where PWS expertise is needed

When families participate, they help ensure the data reflects the full diversity of the PWS community and supports the continued growth of expert, informed care.

By pooling this clinical data and tracking outcomes over time, clinicians can better understand which approaches to care are most effective for managing the complex medical needs associated with PWS.

This clinician-entered data complements the caregiver-reported information collected through the Global PWS Registry, creating 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 impact of both efforts.

The PWS-CLIC Aims to:

Improve access and reduce barriers for individuals with PWS to become involved in clinical research, expanding the diversity of individuals participating.
Create a network of health care providers and clinical researchers who, in partnership with patients, families, and caregivers, will foster collaboration, promote novel clinical investigation, and optimize care for PWS.
Establish a central repository for the consistent collection of de-identified data to expand the shared evidence base.

Find a Clinician Near You!

U.S. CLIC Member Physicians

University of California, Irvine - Irvine, CA
Dr. Virginia Kimonis, Pediatrics

Children's Hospital of Los Angeles - Los Angeles, CA
Dr. Alaina Vidmar, Pediatric Endocrinology

Stanford University - Stanford, CA
Dr. Diane Stafford, Pediatric Endocrinology

Rady Children's Hospital - San Diego, CA
Dr. Lynne Bird, Clinical Genetics

Children's Hospital Colorado - Aurora, CO
Dr. Shawn McCandless, Pediatric Genetics

Children's National Hospital - Washington, DC
Dr. Elizabeth Estrada, Pediatric Endocrinology

University of Florida - Gainesville, FL
Dr. Jennifer Miller, Pediatric Endocrinology

University of Iowa - Iowa City, IA
Dr. Eva Tsalikian, Pediatric Endocrinology

Indiana University - Indianapolis, IN
Dr. Nancy Johnson, Pediatrics

Boston Children's Hospital - Boston, MA
Dr. Amy Fleischman, Pediatric Endocrinology

Johns Hopkins University - Baltimore, MD
Dr. Ann Scheimann, Pediatrics

University of Michigan - Ann Arbor, MI
Dr. Daniel Shumer, Pediatric Endocrinology (site PI)
Dr. Nellie Hani, Pediatric Endocrinology (co-I)

University of Minnesota Masonic Children's Hospital - Minneapolis, MN
Dr. Bradley Miller, Pediatric Endocrinology

Children's Minnesota - Saint Paul, MN
Dr. Jen Abuzzahab, Pediatric Endocrinology

SSM Health Cardinal Glennon Children's Hospital - St. Louis, MO
Barbara Whitman, PhD, Pediatrics (co-I),
Dr. Jennifer Heithaus, Developmental Pediatrics (co-I)

Children's Mercy Kansas City - Kansas City, MO
Dr. Kelsee Halpin, Pediatric Endocrinology (Site PI),
Dr. Emily Paprocki, Pediatric Endocrinology (co-I)

University of North Carolina - Chapel Hill, NC
Dr. Jennifer Law, Pediatric Endocrinology (Site PI),
Dr. Elizabeth Jalazo, Pediatrics (co-I)

Duke University - Durham, NC
Dr. Olga Gupta, Pediatric Endocrinology and Obesity Medicine

St. Joseph's University Medical Center - Paterson, NJ
Dr. Katerina Harwood, Pediatric Endocrinology

Maimonides Medical Center - Brooklyn, NY
Dr. Deepan Singh, Psychiatry

Albert Einstein College of Medicine - Bronx, NY
Dr. Eric Hollander, Psychiatry and Behavioral Sciences

NYU Langone Health - Mineola, NY
Dr. Jorge Mejia-Corletto, Pediatric Endocrinology

Nationwide Children's Hospital - Columbus, OH
Dr. Kathryn Obrynba, Pediatric Endocrinology

Children's Hospital of Philadelphia - Philadelphia, PA
Dr. Ben Yerys, PhD, Psychology (site PI),
Dr. Adda Grimberg, Pediatric Endocrinology (co-I),
Dr. Raghuram Prasad, Psychiatry (co-I)

University of Pittsburgh - Pittsburgh, PA
Dr. Ann Johansson, PhD, DNP, Medical Genetics

Vanderbilt University - Nashville, TN
Dr. Ashley Shoemaker, Pediatric Endocrinology

Endocrine Associates of Dallas - Dallas, TX
Dr. Heidi Shea, Adult and Pediatric Endocrinology

Texas Children's Hospital - Houston, TX
Dr. Kathy Hwu, Pediatrics

Cook's Children's Medical Center - Fort Worth, TX
Dr. Sani Roy, Pediatric Endocrinology (Site PI),
Dr. Keisha Shaheed, Sleep Medicine (co-I)

Children's Hospital of San Antonio - San Antonio, TX
Dr. Elizabeth Roeder, Pediatric Genetics

University of Utah - Salt Lake City, UT
Dr. Dave Viskochil, Pediatric Genetics

Seattle Children's Hospital - Seattle, WA
Dr. Isabella Niu, Pediatric Endocrinology (Site PI),
Dr. Melinda Pierce, Pediatric Endocrinology (co-I)

Canadian CLIC Member Physicians

University of Alberta - Edmonton, AB
Dr. Andrea Haqq, Pediatrics

BC Children's Hospital - Vancouver, BC
Dr. Sanjukta Basak, Pediatric Endocrinology

The Hospital for Sick Children - Toronto, ON
Dr. Jill Hamilton, Pediatrics

CHU Sainte-Justine - Montreal, QC
Dr. Nathalie Alos, Pediatrics (Site PI);
Dr. Cheri Deal, Pediatric Endocrinology (co-I)

Research Findings from the PWS-CLIC

A core strength of the PWS Clinical and Research Expert Consortium is the ability to translate shared clinical experience into meaningful insights that improve care. By pooling data from PWS clinics across the country, the PWS-CLIC is beginning to answer important clinical questions that individual centers cannot address on their own.

Feeding Tube Use Complications Analysis: A PWS-CLIC study of feeding tube use in infants with PWS found that nasogastric (NG) tubes are associated with significantly fewer complications than gastrostomy (G) tubes. These findings are helping to guide safer, more informed decisions in early feeding management.

As participation in the CLIC and the CLIC database continues to grow, this body of work will expand, providing an increasingly robust evidence base to inform clinical care, guide future research, and support the development of improved treatments for individuals with PWS.

PWS Clinical Investigation Collaborative

Improving outcomes for people with PWS across the lifespan

Learning From Every Patient: The PWS-CLIC Database

The PWS-CLIC Aims to:

Find a Clinician Near You!

U.S. CLIC Member Physicians

Canadian CLIC Member Physicians

Research Findings from the PWS-CLIC

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