PWS Clinical Investigation Collaborative

PWS - CLIC

The PWS Clinical Investigation Collaborative (PWS-CLIC) was established in 2021 by a collaborative group of clinical researchers, health care providers and patient advocates, who are working together to improve the care of all individuals with Prader-Willi syndrome (PWS). 

Mission:  The mission of the PWS-CLIC is to improve the quality of clinical research and medical care for people with PWS across the lifespan through collaborative investigation and research to support evidence-based care.

Vision: The PWS-CLIC integrates health care providers and clinical researchers across many specialties focused on the care of patients with PWS. This collaboration fosters the development of key clinical questions, sharing novel observations, aggregating de-identified clinical data to support learning from every patient, and creates a network for rapidly answering important clinical questions. It also expands the PWS population available for clinical research, therapeutic trials, and other investigations, leading to improved evidence-based clinical care.

Current Projects

  • Feeding tubes and complications in PWS
    • Identify the rates of feeding tube placement in infants with PWS.
    • Understand the types of complications related to feeding tube placement in individuals with PWS.
    • Compare rates of feeding tube-related complications in the PWS population with the rates reported in the general population.
  • Hypogonadism
    • Understand patient preferences on the use of sex steroids in PWS
    • Develop consensus guidelines for the use of sex steroids in PWS
  • Normal PWS spine
    • Defining the normal PWS spine, in order to provide guidance for appropriate post-surgical alignment in PWS
  • Development of standardized labs order sets and templates
    • Create standard templates and order sets to standardize care across sites as well as create a streamlined and efficient way to collect data from multiple sites

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.


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Find A Clinician Near You!

 

Clinic Site Location (City, State) Physicians On-Site
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 (Site PI), Dr. Jessica Duis, Pediatric Genetics (co-I)
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 Minnesota Masonic Children's Hospital Minneapolis, MN Dr. Bradley Miller, Pediatric Endocrinology
SSM Health Cardinal Glennon Children’s Hospital St. Louis, MO Barbara Whitman, PhD, Pediatrics (Site PI), Dr. Susan Myers, Pediatric Endocrinology (co-I)
Children’s Mercy Kansas City Kansas City, MO Dr. Kelsee Halpin, Pediatric Endocrinology (Site PI), Dr. Emily Paprocki, Pediatric Endocrinology (co-I)
Albert Einstein College of Medicine Bronx, NY Bonnie Taylor, PhD, (Site PI), Dr. Eric Hollander, Psychiatry and Behavioral Sciences (co-I)
Nationwide Children’s Hospital Columbus, OH Dr. Kathryn Obrynba, Pediatric Endocrinology
Vanderbilt University Nashville, TN Dr. Ashley Shoemaker, 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), Keisha Shaheed, Sleep Medicine (co-I)
Children’s Hospital of San Antonio San Antonio, TX Dr. Elizabeth Roeder, Pediatric Genetics (Site PI), Dr. Scott McLean, Clinical Genetics (co-I)
University of Utah Salt Lake City, UT Dr. Dave Viskochil, Pediatric Genetics
Seattle Children’s Hospital Seattle, WA Dr. Parisa Salehi, Pediatric Endocrinology
Independent Clinician   Dr. Harold van Bosse, Orthopedics

 

CLIC Sites - Canada

 

Clinic Site Location (city, province) Physicians On-Site
University of Alberta Edmonton, AB Dr. Andrea Haqq, Pediatrics
The Hospital for Sick Children Toronto, ON Dr. Jill Hamilton, Pediatrics
CHU Sainte-Justine Montreal, QC Dr. Cheri Deal, Pediatric Endocrinology (co-I)

 

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CLIC Executive Committee

Stafford Diane MD Dr. Diane Stafford (Chair of the CLIC Executive Committee) is a Clinical Professor of Pediatrics at Stanford University School of Medicine in the Division of Endocrinology and Diabetes. She has been providing care to children and young adults with PWS for over 20 years and has a particular interest in disorders of puberty seen in the syndrome.
McCandless Dr. Shawn E. McCandless is a Professor of Pediatrics, and the Section Head for Genetics and Metabolism at the University of Colorado Anschutz Medical Campus and Children’s Hospital Colorado. He is past President of the Society for Inherited Metabolic Disorders (SIMD). His research has focused on inborn errors of metabolism (IEM) and Prader-Willi syndrome (PWS), including publicly and industry-funded clinical trials for children and adults with IEMs and PWS. After training with Dr. Suzanne Cassidy, he has been the Medical Director of PWS multi-disciplinary clinics in North Carolina, Ohio, and now in Colorado. He is board-certified in Pediatrics (1992), Clinical Genetics (1999), and Clinical Biochemical Genetics (2005). He is a fellow of the American Academy of Pediatrics and of the American College of Medical Genetics.
Salehi_Parisa square Dr. Parisa Salehi received her medical degree from the University of Nevada School of Medicine in 2007. Her pediatric and pediatric endocrine training were at Children’s Hospital Orange County, Orange, CA, and Children’s Hospital Los Angeles, LA, CA, respectively. She joined the faculty at Seattle Children’s Division of Endocrinology in 2013 and has been the clinical director of the SCH PWS Clinic since its inception in 2014.
Viskochil Dr. Dave Viskochil has focused his research on the molecular genetics of neurofibromatosis type 1 (NF1). Under the mentorship of John Carey and Ray White, he was a recipient of the Young Investigator Award from the National Neurofibromatosis Foundation (now CTF; Children’s Tumor Foundation) in 1988. He is Medical Director for the University of Utah Genetics Counselor Training Program and Director of the Medical Genetics Training Program at the University of Utah. He serves as the Director of the Prader-Willi Syndrome Clinic at the University of Utah. He oversees care of MPS (mucopolysaccharidosis) Disorders at the University of Utah and serves on the International Board of Advisors for the MPS I Registry. He provides genetics services for the TSC (tuberous sclerosis complex) Clinic at the University of Utah. His career focus has shifted to the implementation of clinical trials for rare disorders.
Duis Dr. Jessica Duis is a pediatric geneticist, who did her medical training at Johns Hopkins. She is a board-certified pediatrician and medical geneticist who practices in the area of genetics and complex/special care pediatrics. She has focused her career on chromosome 15 disorders including Prader-Willi syndrome and her career has spanned translational, clinical, and bench research. She is passionate about establishing standards of care and personalized therapeutic interventions for individuals with neurodevelopmental disorders. She has designed and worked on many clinical trials and currently focuses on management guidelines and establishing outcome measures that quantitatively capture clinically significant features of neurodevelopmental disorders in the natural environment.
Haqq Dr. Andrea Haqq is a Pediatric Endocrinologist at the Stollery Children’s Hospital and a Professor of Pediatrics at the University of Alberta, Canada. As a clinician-scientist with an established international collaborative research program, she explores the genetic and metabolic foundations of pediatric obesity. Dr. Haqq is an internationally recognized expert in the study of Prader-Willi Syndrome (PWS) and childhood obesity. She has become known and sought after as a specialized pediatric endocrinologist for such children. Currently, she is the Director of The Muttart Diabetes Research and Training Centre (2020). She leads the Canadian data coordinating centre for children with severe obesity in The TEMPO (Tracing the Effect of the MC4 Pathway in Obesity) Registry (Rhythm Pharmaceuticals). Her expertise spans the interface of basic, clinical, and translational research and her novel studies have incorporated biochemistry, physiology, genetics, human microbiota, and clinical trials.

 

PWS global registry