The Global PWS Registry
Every Story Shared Brings Us Closer to Better Treatments—and One Day, a Cure.
Heading 1
with a request body that specifies how to map the columns of your import file to the associated CRM properties in HubSpot.... In the request JSON, define the import file details, including mapping the spreadsheet's columns to HubSpot data. Your request JSON should include the following fields:... entry for each column.
Every breakthrough in Prader-Willi syndrome (PWS) research begins with families who chose to participate. Every diagnosis, milestone, challenge, and success adds to our understanding of PWS, helping researchers develop better treatments and improve care.
The Global PWS Registry gives families a simple way to contribute to that progress. By sharing their experiences, families are helping shape the future of PWS research—one survey at a time.
What is the Global PWS Registry?
The Global PWS Registry is an international research platform that allows families to contribute to Prader-Willi syndrome research from home. Caregivers complete secure online surveys about their loved one's health, development, treatments, and daily life over time.
The information shared by thousands of families creates one of the most comprehensive sources of real-world data on PWS. Researchers use these data to better understand how PWS changes across the lifespan, identify unmet medical needs, improve the design of clinical trials, evaluate the long-term impact of treatments, and guide future research.
Together, Registry participants are helping answer important questions, including:
- Why do symptoms vary from person to person?
- Which treatments are making the greatest difference?
- How does PWS change throughout childhood and adulthood?
- What challenges remain unmet?
- Where should researchers focus next?
No single family can answer these questions alone. But together, families are accelerating discoveries that have the potential to improve the lives of everyone living with PWS.
The Global PWS Registry
Why Should You Participate in the Registry?
The Global PWS Registry is one of the most important tools advancing PWS research. Registry data has already supported major initiatives, including PATH for PWS, a natural history study that played a key role in the development and regulatory review of VYKAT XR—the first FDA-approved treatment for hyperphagia in PWS.
As new therapies become available, the Registry continues to evolve, collecting real-world information that helps researchers understand long-term treatment outcomes, identify unmet needs, and guide future studies.
By participating, you help researchers:
- Discover trends that individual clinics cannot see
- Improve standards of care
- Design stronger clinical trials
- Better understand how treatments work in the real world
- Identify priorities for future research
- Accelerate the development of new therapies
Every survey and every update helps build the knowledge needed for the next breakthrough in Prader-Willi syndrome.
The Global PWS Registry brings together real-world experiences from people with PWS and their families. Each survey helps researchers recognize patterns, understand differences, and build a clearer picture of PWS across ages and stages.
How is Your Data Used?
Your privacy and trust are at the heart of the Global PWS Registry. The information you share is stored on a secure, password-protected platform that meets rigorous privacy and security standards. Access to identifiable information is limited to authorized members of the Registry research team who manage the Registry.
Researchers from universities, hospitals, government agencies, and industry may request access to Registry data to advance Prader-Willi syndrome research. Every request is carefully reviewed by the Registry Advisory Board to ensure the project is scientifically sound, ethically appropriate, and focused on improving the lives of people with PWS. Only approved researchers receive access to Registry data.
Researchers receive de-identified data, meaning names and other information that could identify participants have been removed. Researchers are given only the minimum data needed to answer their research question, and all data sharing follows strict privacy and ethical guidelines.
Your family's information is never sold, and every survey you complete is used to help advance research while protecting your privacy.
Join the Global PWS Registry
Getting started is easy. Create your secure account, complete the enrollment process, and share your family's experience through a series of guided online surveys.
Every survey and update helps researchers better understand Prader-Willi syndrome, accelerate new discoveries, and move us closer to better treatments.
The next breakthrough won't come from one scientist or one family alone. It will happen because thousands of families chose to share their experiences and help shape the future of PWS research.
Join the Global PWS Registry Today
You can help write the next chapter in Prader-Willi syndrome research..
Heading 1
with a request body that specifies how to map the columns of your import file to the associated CRM properties in HubSpot.... In the request JSON, define the import file details, including mapping the spreadsheet's columns to HubSpot data. Your request JSON should include the following fields:... entry for each column.
Frequently Asked Questions
Who can participate?
Caregivers of a person diagnosed with Prader-Willi syndrome are encouraged to register. In instances where the adult individual with PWS may wish to complete surveys, we recommend that the caregiver maintain ownership of the account and provide support to ensure survey completeness.
Is participation limited to the United States?
No. The Global PWS Registry welcomes families from around the world because every experience strengthens our understanding of this rare disorder.
Is my information secure?
Protecting your privacy is a top priority. The Global PWS Registry is governed by strict ethical and security standards. Participant information is stored securely, and researchers receive de-identified data through an approved review process. Your personal information is never sold, and you remain in control of your participation.
Is my information shared with researchers?
Yes—but only in a way that protects your privacy. All data shared with researchers is de-identified, meaning information that could directly identify you or your loved one is removed.
Requests for data are reviewed by the Registry Advisory Board, and researchers receive only the minimum de-identified data needed for approved studies.
Does joining enroll me in a clinical trial?
No. The registry is separate from clinical trials. However, registry participation may help researchers identify future study opportunities that match your family's interests and eligibility.
How often should I update my information?
We encourage families to return whenever there is a meaningful health change and to complete periodic updates. Long-term participation provides researchers with invaluable insights into how PWS evolves over time.
Why are ongoing updates so important?
The most important discoveries often come from understanding change. By following individuals over months and years, researchers can identify trends that would otherwise remain invisible.
Can I withdraw from the registry?
Participants are able to withdraw from the study at any time. However, researchers may still use the information that they have collected prior to the participant changing their mind.
Latest Data From the Registry
Your participation helps us uncover new insights into PWS. We've translated many of these findings into easy-to-understand articles for families. Explore insights from Global PWS Registry Data:
- Anxiety in PWS
- Dental Issues
- Dermatology
- Developmental Milestones in PWS
- Friendships in PWS
- GI Issues in Prader-Willi Syndrome
- Growth Hormone
- Living Situations
- Mental Health Therapies
- Scoliosis
- Sleep Issues
- Speech Therapy
- Strengths of People with Prader-Willi Syndrome
- Swallow Studies
- Thyroid Issues
- Tube Feeding
- Vision
- Vomiting and Choking in PWS
Publications Powered by the Registry
Every survey completed contributes to a growing body of scientific knowledge. Researchers around the world have used Global PWS Registry data to answer important questions about Prader-Willi syndrome, resulting in peer-reviewed publications that are improving clinical care and guiding future research.
Explore publications generated using Global PWS Registry data →
Anxiousness and Distress Questionnaire (PADQ)
The Prader-Willi Syndrome Anxiousness and Distress Behaviors Questionnaire (PADQ) measures observable behaviors that are meaningful to people with PWS and their families and provides a valid, reliable way to assess whether new treatments improve some of the most challenging behaviors associated with PWS. The evaluation and validation of the PADQ was made possible through the participation of families in the Global PWS Registry, demonstrating how Registry data can help advance the development of better outcome measures for clinical trials.
Diagnosis
Age of diagnosis for children with chromosome 15q syndromes (2023)
This study examined when children with Prader-Willi syndrome are diagnosed and found that, although diagnosis is happening earlier than in the past, delays still occur for many families.
Hyperphagia Questionaire (HQCT)
This study showed that the Hyperphagia Questionnaire for Clinical Trials (HQ-CT) clearly distinguishes food-related behaviors in people with Prader-Willi syndrome from those seen in typically developing individuals, supporting its use as an important outcome measure in clinical trials.
Neuropsychiatric Features
Neuropsychiatric Features of Prader–Willi Syndrome
Using data from nearly 900 participants in the Global PWS Registry, this study provided one of the most comprehensive descriptions to date of the behavioral, psychiatric, and sleep-related features of Prader-Willi syndrome.
Registry Development and Launch
The Global Prader-Willi Syndrome Registry: Development, Launch, and Early Demographics
This paper describes the development and early success of the Global Prader-Willi Syndrome Registry and demonstrates how information shared by families can be transformed into a valuable research resource.
Strabismus and Vision Challenges
Using data from more than 900 participants in the Global PWS Registry, this study found that people with Prader-Willi syndrome have much higher rates of strabismus (crossed eyes), amblyopia ("lazy eye"), and farsightedness than the general population.
Suicidality
Suicidality In Individuals With Prader-Willi Syndrome: A Review Of Registry Survey Data
Using data from 750 participants in the Global PWS Registry, this study provided the first estimates of suicidal thoughts and suicide attempts among people with Prader-Willi syndrome.
Thrombosis and D-Dimer Levels
Using data from the Global PWS Registry, this study found that people with Prader-Willi syndrome have a higher risk of developing blood clots (thrombosis) than the general population. The researchers also showed that routine D-dimer blood testing is not an effective screening tool for detecting blood clots in people with PWS who do not have symptoms.