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.
|Location (City, State)
|University of California, Irvine
|Dr. Virginia Kimonis, Pediatrics
|Children’s Hospital of Los Angeles
|Los Angeles, CA
Dr. Alaina Vidmar, Pediatric Endocrinology
|Dr. Diane Stafford, Pediatric Endocrinology
|Rady Children’s Hospital
|San Diego, CA
|Dr. Lynne Bird, Clinical Genetics
|Children’s Hospital Colorado
|Dr. Shawn McCandless, Pediatric Genetics
|University of Florida
|Dr. Jennifer Miller, Pediatric Endocrinology
|University of Iowa
|Iowa City, IA
|Dr. Eva Tsalikian, Pediatric Endocrinology
|Dr. Nancy Johnson, Pediatrics
|Boston Children's Hospital
|Dr. Amy Fleischman, Pediatric Endocrinology
|Johns Hopkins University
|Dr. Ann Scheimann, Pediatrics
|University of Minnesota Masonic Children's Hospital
|Dr. Bradley Miller, Pediatric Endocrinology
|SSM Health Cardinal Glennon Children’s Hospital
|St. Louis, MO
|Dr. Harold van Bosse, Orthopedics (Site PI), 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)
|St. Joseph's University Medical Center
|Dr. Katerina Harwood, Pediatric Endocrinology
|Maimonides Medical Center
|Dr. Deepan Singh, Psychiatry
|Albert Einstein College of Medicine
|Dr. Bonnie Taylor, PhD, (Site PI), Dr. Eric Hollander, Psychiatry and Behavioral Sciences (co-I)
|NYU Langone Health
|Dr. Jorge Mejia-Corletto, Pediatric Endocrinology
|Nationwide Children’s Hospital
|Dr. Kathryn Obrynba, Pediatric Endocrinology
|University of Pittsburgh
|Dr. Ann Johansson, PhD, DNP, Medical Genetics
|Dr. Ashley Shoemaker, Pediatric Endocrinology
|Texas Children’s Hospital
|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
|Dr. Parisa Salehi, Pediatric Endocrinology
|Location (city, province)
|University of Alberta
|Dr. Andrea Haqq, Pediatrics
|The Hospital for Sick Children
|Dr. Jill Hamilton, Pediatrics
|Dr. Cheri Deal, Pediatric Endocrinology (co-I)
|Dr. Diane Stafford 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.
|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.
|Dr. Parisa Salehi (Chair of the CLIC Executive Committee) 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.
|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.
|Dr. Ann Scheimann is a member of the full-time faculty within the Department of Pediatrics/Division of Pediatric Gastroenterology at Johns Hopkins School of Medicine and continues to see patients with Prader-Willi Syndrome at Johns Hopkins and through the Prader-Willi Syndrome Clinic at Texas Children's Hospital. Dr. Scheimann's focus of research interest has been in nutrition and obesity with special areas of interest in Prader-Willi Syndrome and nonalcoholic fatty liver disease. She has authored or co-authored to date approximately 90 peer-reviewed publications in addition to book chapters, and meeting presentations.
|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.