Growth hormone research 30+
The Erasmus Medical Center is collaborating with hospitals from Sweden, Italy, Australia and France to conduct a large study on the effects of growth hormone (GH) treatment in adults with PWS of 30 years and older.
Why do we need this study?
When people with PWS are grown up, GH treatment is no longer reimbursed. The Dutch Growth Research Foundation extensively studied the effect of GH treatment in children. Because of these studies it is now possible to receive GH until adolescence. Unfortunately, only people with PWS under 30 can participate in these studies.
People with PWS of 30+ cannot receive GH treatment. However, GH treatment is also important for older people with PWS! When GH treatment is stopped, muscle mass decreases and fat mass increases. Moreover, GH is important for a good quality of life.
We need this study to convince the health insurance companies that GH treatment should also be reimbursed for older individuals with PWS.
This study will cost 1.2 million euros. We already have 1.1 million, but we still need the last €100.000,-. To collect this money, the Erasmus Medical Center works together with the Dutch Prader-Willi Foundation (PWF: Prader-Willi Fonds). The PWF already provided the first €20.000,-. For the last €80.000,- we need you! Donate now or take action yourself!
Click here to see which actions we already did and to donate.
Help to make this study possible!
We expect that approximately 100 adults with PWS will participate in this study. The participants will be randomized to two groups. One group will receive GH treatment for one year, the other group gets a placebo (an injection that looks exactly like the GH injections, but without GH in it). After a year the patients that received placebo will receive GH treatment for a year and vice versa.
Both the participants and the treating physicians will be unaware of which participants receive which treatment, also called a double blind study. In this way, we will be sure that the differences we find are due to the GH treatment itself. If this study shows that GH has beneficial effects in adults with PWS, it will help to convince the health insurance companies that GH treatment should also be reimbursed for adults with PWS.
The research group
Laura de Graaff-Herder, MD, PhD, works as an endocrinologist at the Erasmus Medical Center in Rotterdam, a reference center for PWS. She launched a multidisciplinary outpatients clinic for adults with PWS. More than 115 adults with PWS have visited this outpatients clinic. Because she thinks this study is really important, she decided to take action herself!
Karlijn Pellikaan is researcher at the PWS reference center and will also be involved in the GH study as a researcher.
Kirsten Davidse is nurse practitioner at the PWS reference center. She treats people with PWS and will also play a role in the GH study as research nurse.
Anna Rosenberg is also researcher at the PWS reference center. She conducts research to improve patientcare and performs laboratory tests to gain knowledge on the pathophysiology of PWS.
Anja Roubos is psychologist at the Vincent van Gogh institute. She is involved in the psychological care of a lot of adults with PWS.
José Veen is a dietitian specialized in people with an intellectual disability. She is one of the founders of the happy weight Dot Plan, a special diet for patients with an intellectual disability.