Growth hormone therapy (GHT) is a standard of care for individuals with Prader-Willi syndrome (PWS) from infancy through adolescence and is recommended for adults with PWS. Data collected through the Global PWS Registry helps us better understand growth hormone use in PWS, when treatment begins, and how families perceive its benefits.
Growth Hormone Use Is Common in PWS
Among participants in the Global PWS Registry who have provided information about growth hormone, 89.3% have received growth hormone therapy (N=943). It is encouraging to see that most individuals with PWS receive growth hormone at some point in their life.
Growth hormone therapy impacts many aspects of PWS, improving body composition, growth and development, increasing muscle mass, promoting better bone health, and impacting overall quality of life.
Most Participants Report Benefits from Growth Hormone
Of those individuals in the Registry who have used growth hormone, 86% of families report benefit from GHT (N=820).
This information from parents/caregivers represents their perspective on the benefits of GHT in everyday life. This real-world experience complements the published clinical reports of the efficacy of GHT in PWS.
When Do People with PWS Start Growth Hormone?
Data from the Global PWS Registry shows that individuals with PWS have started GHT at a range of ages. Some participants started during infancy, while others began treatment later in childhood or adolescence.
When looking at all participants in the Registry who have received GHT, 51% started by 12 months of age (N = 795). However, this doesn’t tell the whole story since the Registry includes people of many different ages, including adults who may have been infants long before GHT was approved for PWS. For that reason, looking specifically at younger participants provides a more current picture of when children with PWS are beginning GH therapy.
A Closer Look at Younger Participants
Among participants who were 15 years old or younger as of August 2026 (N=319), 75% began growth hormone treatment by 12 months of age.
This data shows the shifting standards in caring for individuals with PWS. While just over half of participants in the full dataset began growth hormone by 12 months, three-quarters of participants currently aged 15 and younger who have used GHT started by their first birthday.
This difference reflects changes in treatment patterns over time and demonstrates how new knowledge about the benefits of early GHT impacted the age at which growth hormone is started in infants and young children with PWS. Additional data gathered through the Registry can help answer questions about how this early initiation of GHT may change outcomes later in life.
Your Participation Matters
The Global PWS Registry captures information directly from individuals with PWS and their families, helping researchers understand how care and experiences change over time.
Growth hormone is a great example of this. An adult or senior with PWS may have had a very different experience than a child diagnosed today. By looking at age, treatment history, and participant-reported experiences together, researchers can see the bigger picture and identify productive areas for future research.
Every participant adds to our understanding of PWS. By completing and updating Registry surveys, families and individuals with PWS help researchers better understand the community and support research that may optimize future care.
Learn more about the Global PWS Registry and how to participate.
