PWS Research Participation Opportunities
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You Can Make a Difference
There are many ways to help advance research in Prader-Willi syndrome (PWS), from sharing information about your experience to participating in studies and clinical trials. Every type of participation provides researchers with valuable information that can help improve understanding of PWS and advance potential treatments.
This page highlights research opportunities that may be available to you, including the Global PWS Registry, research surveys, behavioral studies, biological sample donation, and clinical trials. Explore the options below to learn more and find a way to get involved.
Looking for a PWS clinical trial? Visit our clinical trials page.
Find the Right Research Opportunity
Join The Global PWS Registry
Contribute to the world's largest natural history study of Prader-Willi syndrome by sharing health information over time.
Global PWS Registry VIRTUAL ALL AGES View details Hide details
About
Consists of surveys that can be completed at your own pace.
Eligibility
Participation
Investigator
Complete Research Surveys
Researchers frequently conduct surveys to learn more about the daily experiences of individuals living with PWS and their caregivers. Survey participation often takes less than an hour and can usually be completed from home.
GoCarer Caregiver Survey VIRTUAL AGES 2-25 View details Hide details
About
The GoCarer Study aims to better understand caregiver burden and stress in families affected by Prader-Willi syndrome. Participation is completed entirely online, with no in-person visits required.
Learn More about the GoCarer Study→
Who Can Participate
Caregivers (18+) of a person with Prader-Willi syndrome aged 2–25
Time Commitment
Investigator
University of Alberta
BRAVE PWS Caregiver Study VIRTUAL AGES 4+ View details Hide details
About
The BRAVE PWS Caregiver Study collects real-world health information over time to better understand the daily experiences of individuals with PWS and their caregivers.
Who Can Participate
Caregivers of a person with Prader-Willi syndrome age 4 or older.
Time Committment
Short monthly surveys and health tracking
Investigator
Folia Health
Sponsored by Soleno, a Neurocrine Biosciences company
Participate In Behavior & Development Interventions
Some research studies evaluate non-drug interventions designed to improve the lives of individuals with Prader-Willi syndrome. These programs may focus on areas such as play, learning, communication, behavior, or social development.
Assessing Creativity & Play in PWS VIRTUAL AGES 8-20 View details Hide details
About
Researchers are studying the long-term effects of play-based interventions for children and young adults with Prader-Willi syndrome. Findings may help improve future developmental and behavioral support programs.
Who Can Participate
Individuals with Prader-Willi syndrome, ages 8–20
Time Committment
One 60–90 minute visit
Investigator
Case Western Reserve University Neurodevelopmental Research Lab
Bringing PRETEND to You! VIRTUAL AGES 3-5 View details Hide details
About
Researchers are evaluating a structured play intervention designed to support young children with Prader-Willi syndrome. Families complete virtual assessments before and after the program and receive training to support participation.
Who Can Participate
Children with Prader-Willi syndrome ages 3–5 who have a local provider able to implement the intervention
Time Committment
Nine-week intervention program, including virtual training and assessments
Investigator
Case Western Reserve University Neurodevelopmental Research Lab
Observational Studies
Skin Picking Study IN-PERSON AGES 10-25 View details Hide details
About
This study aims to understand the mechanisms underlying skin-picking behavior to inform the development of new treatments.
Eligibility
Individuals with PWS aged 10- 25 who engage in skin picking daily.
Participation
Investigator
Stanford University
Donate A Biological Sample
Some studies seek blood, saliva, or other biological samples to better understand the biology of Prader-Willi syndrome. Donations of tissues and other samples can help researchers identify biomarkers, understand disease mechanisms, and evaluate potential therapies.
PWS Biorepository Sample Donation IN-PERSON ALL AGES View details Hide details
About
We are seeking people with PWS to contribute blood and urine samples to the FPWR biorepository, a valuable resource that supports ongoing PWS research. Participation in this effort helps researchers better understand Prader-Willi syndrome and supports the development of future treatments aimed at improving quality of life.
Who Can Participate
Participation
In addition to providing a sample, donors will be asked to complete 4 surveys within the Global PWS Registry.
Participants will receive a $150 gift card.
Investigator
The Foundation for Prader-Willi Research in collaboration with Combined Brain.
Post-Mortem Brain Tissue Donation POST-MORTEM ALL AGES View details Hide details
About
Brain tissue donation helps researchers better understand the biology of Prader-Willi syndrome and supports studies aimed at identifying disease mechanisms and developing future therapies.
Who Can Participate
Participation
Investigator
Frequently Asked Questions
Why do researchers need surveys and registries?
Surveys and patient registries help researchers understand the real-world experiences of people living with Prader-Willi syndrome. This information helps identify unmet needs, improve clinical trial design, measure treatment outcomes, and guide future research priorities.
How does the Global PWS Registry help researchers?
Registry participants provide long-term information that helps researchers understand the natural history of PWS, identify trends, recruit for clinical trials, and generate evidence that supports treatment development.
Can I Participate from Home?
Yes. Many research opportunities—including surveys, interviews, and portions of observational studies—can be completed remotely, allowing families around the world to contribute.
Can I participate if I live outside the United States?
Many studies welcome international participants, particularly surveys and the Global PWS Registry. Eligibility depends on the individual project.
How do I know which research study is right for me?
Each research opportunity has different eligibility requirements based on age, location, and study goals. Review the eligibility criteria for each opportunity, and contact the study team if you have questions.
Will participating improve my family member's care?
Most research studies are designed to improve scientific understanding rather than provide direct medical benefit. However, every participant helps accelerate discoveries that may improve care for future generations.
Will we be paid to participate?
Some activities offer a small stipend for participation.