Clinical Trials Recruiting in Australia
Clinical trials tell us if a new therapy is safe and if it will help make life with PWS better.
The faster a clinical trial is completed, the sooner we know if the therapy works. You can help by taking part in clinical trials and registries. Your doctor and the study coordinator can help you decide if a trial is a good fit for you and your family.
Clinical trial resources:
Disclosure: PWFRA does not endorse or recommend any specific study, we aim to provide information about trials that people with PWS living in Australia can participate in.
PWS Clinical Trials
| Study | Type | Age | Location | Contact/Study Link | Status |
|---|---|---|---|---|---|
| Acamprosate; investigating a new target for treatment in PWS PWS FLYER Recruitment Video |
Intervention - Drug | 18-30 | Sydney RPAH | clinicaltrials.boden@sydney.edu.au or 02 8627 6048 | Recruiting |
| Tania Markovic; Gastrointestinal transit and safety of Tirzepatide in people with PWS Recruitment Video |
Intervention - Drug | adults | Sydney RPAH | clinicaltrials.boden@sydney.edu.au | Recruiting |
| GeneEQUAL: Co-production with people with intellectual disability to achieve more inclusive, person-centered, and respectful healthcare Study Link |
Observation (interviews) | parents/carers and/or young people with PWS (up to 28yo) | discuss with study lead | Contact: https://geneequal.com/ | Recruiting |
| Does CBD reduce severe behaviour problems in children and adolescents with intellectual disability? Recruitment Poster Recruitment Video |
Intervention (drug) | 6- 18 years | Melbourne (MCRI) and Sydney (Westmead) | mctrials@mcri.edu.au or 02 8627 6048 | Recruiting |
| Harmony Biosciences; TEMPO study; evaluating pitolisant for excessive daytime sleepiness in PWS |
Intervention (drug) | TBC | Qld, Sydney | For more information on the trial, contact one of the study sites:
Queensland Children’s Hospital
Megan Angliss, Study Coordinator. Email: chq_pwsresearch@health.qld.gov.au
Sydney Children’s Hospital Randwick Email: schn-schclinicaltrials@health.nsw.gov.au Sydney Children’s Hospital Westmead. Investigator: Dr. Yoon Hi Cho, Email: yoonhi.cho@health.nsw.gov.au RPAH: Study Coordinator Tegan Picone email: tegan.picone@sydney.edu.au |
Currently recruiting |
| ARD-101 for Treatment of PWS: The Hunger Elimination or Reduction Objective Trial (HERO) | Intervention (drug) | 13 Years and older (Child, Adult, Older Adult) | Sydney, RPAH, John Hunter Children's Hospital and QCH, QLD | For more information on the trial, contact one of the study sites:
Queensland Children’s Hospital
Ellen Taylor, Study Coordinator. Email: CHQ_CCTRND@health.qld.gov.au
Royal Prince Alfred Hospital Email: clinicaltrials.boden@sydney.edu.au John Hunter Children's Hospital Site lead: Dr. Patricia Crock, Email: COMING SOON |
Coming Soon, third quarter of 2025 |
| Growth and Energy requirements in PWS | Observation & Pedometer | Child with PWS, 2-17 years old | Royal Children's Hospital, Melbourne | For more information on the trial, contact Anela Halilagic, 0478 059 555 or email: A.Halilagic@latrobe.edu.au | Currently recruiting, until September 2025 |
PWS Registries and Biobanks
| Study | Type | Age | Location | Contact/Study Link | Status |
|---|---|---|---|---|---|
| Australian Chromosome 15 Biobank Biobank Flyer Biobank EIO |
Intervention - Biological sample collection, surveys and assessments | Any | National | diagnosis.development@mcri.edu.au | Recruiting |
| Global PWS Registry |
Observational - survey | All ages | Online | www.pwsregistry.org | Recruiting |
| Australasian Prader Willi Database | Observational - survey | 0-25 years | Online | Contact: jenny.downs@telethonkids.org.au | Recruiting |
Please forward details of additional PWS studies recruiting in Australia to info@praderwilli.org.au
Last updated: 31 March 2025
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