You or someone you love could be part of developing new therapies for Prader-Willi syndrome. Learn about Gedeon Richter's research study KITE-PWS, also known as RGH-706-003, to evaluate an experimental drug for hyperphagia in people with Prader-Willi syndrome. The oral drug RGH-706 works by blocking melanin-concentrating hormone (MCH), which is a key part in the brain’s food seeking mechanism, to help reduce appetite.
To be in the study, participants must meet the following basic criteria:
- Are at least 17 years of age
- Have a diagnosis of PWS
- Have a body weight of greater than 40 kg (88 lbs.) and less than 200 kg (450 lbs.)
- Have had a stable body weight for the past 3 months
- Have at least 1 consistent and reliable primary caregiver who can evaluate changes in the participant’s hyperphagia symptoms, mood, health, and behavior throughout the study
- Do not have uncontrolled diabetes or diabetes that requires insulin
Medical history and other criteria will also be reviewed to determine eligibility. The study lasts 5-6 months and requires about 8 study visits. The study drug, tests, examinations, and study-related medical care are provided at no cost. Reimbursement for certain study-related expenses such as travel may also be available.
Click here to find more information about the study and contact Gedeon Richter's Medical Information Scientific Service at medinfo@richter.hu to inquire about participating.
Gedeon Richter also provided a list of doctors in the U.S. who can be contacted to provide more information about this clinical trial opportunity:
- CA , San Diego Rady Children's Hospital e-mail: hfolk1@rchsd.org; lbird@rchsd.org; phone: (858) 576-1700 ext. 221543; (858) 966-5808
- NY, New York Morgan Stanley Children's Hospital of NewYork e-mail: jc688@cumc.columbia.edu; phone: (212) 305-5508
- NY, Mineola NYU Langone Hospital—Long Island e-mail: Jorge.Mejia-Corletto@nyulangone.org marilyn.richardson@nyulangone.org; phone: (516) 663-351
- NY, Brooklyn Maimonides Medical Center e-mail: DEsingh@maimonidesmed.org; hmustafic@mainmonidesmed.org; phone: (718) 283-8160
- OH, Cleveland University Hospitals Medical Center e-mail: genya.kisin@uhhospitals.org; Jirat.Chenbhanich@UHhospitals.org; phone: (216) 286-9202
- IL, Chicago Ann & Robert H. Lurie Children's Hospital of Chicago email: PKhanna@luriechildrens.org; sratnam@luriechildrens.org; phone: (312) 227-6090
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Jennifer Bolander has been serving as a Special Education Specialist for PWSA (USA) since October of 2015. She is a graduate of John Carroll University and lives in Ohio with her husband Brad and daughters Kate (17), and Sophia (13) who was born with PWS.
Perry A. Zirkel has written more than 1,500 publications on various aspects of school law, with an emphasis on legal issues in special education. He writes a regular column for NAESP’s Principal magazine and NASP’s Communiqué newsletter, and he did so previously for Phi Delta Kappan and Teaching Exceptional Children.
Evan has worked with the Prader-Willi Syndrome Association (USA) since 2007 primarily as a Crisis Intervention and Family Support Counselor. Evans works with parents and schools to foster strong collaborative relationships and appropriate educational environments for students with PWS.
Dr. Amy McTighe is the PWS Program Manager and Inpatient Teacher at the Center for Prader-Willi Syndrome at the Children’s Institute of Pittsburgh. She graduated from Duquesne University receiving her Bachelor’s and Master’s degree in Education with a focus on elementary education, special education, and language arts.
Staci Zimmerman works for Prader-Willi Syndrome Association of Colorado as an Individualized Education Program (IEP) consultant. Staci collaborates with the PWS multi-disciplinary clinic at the Children’s Hospital in Denver supporting families and school districts around the United States with their child’s Individual Educational Plan.
Founded in 2001, SDLC is a non-profit legal services organization dedicated to protecting and advancing the legal rights of people with disabilities throughout the South. It partners with the Southern Poverty Law Center, Protection and Advocacy (P&A) programs, Legal Services Corporations (LSC) and disability organizations on major, systemic disability rights issues involving the Individuals with Disabilities Education Act (IDEA), Americans with Disabilities Act (ADA), and the federal Medicaid Act. Recently in November 2014, Jim retired.