Participate in clinical studies

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UNIEK study started! – Participants wanted

The UNIEK study started in April 2023. Within this study, we are conducting research into people who have been found to have a rare genetic variant and who have been diagnosed with an autism spectrum disorder (ASD). We are looking for participants! Do you want to participate?
May 9, 2023

ZEN study

Met de ZEN studie proberen we te onderzoeken of hoge resolutie zenuwechografie gebruikt kan worden voor het onderzoeken van de zenuwen van mensen met neurofibromatose type 1. Ook onderzoeken we of we veranderingen over de tijd kunnen meten.
January 26, 2023

The ROSA Study has started!

The ROSA study for children with Angelman syndrome started in June 2021. In this study we are looking for suitable and feasible outcome measures for children with Angelman syndrome, and we want to learn more about the natural history of this rare syndrome.
July 2, 2021

Afgeronde klinische studies (deelname gesloten)

Research into the use of the drug Gaboxadol in children with Angelman Syndrome completed

In 2019 and 2020, we participated in an international study with the ENCORE expertise center for Angelman Syndrome into the effect of the drug gaboxadol in children with Angelman Syndrome. This is a drug that stimulates the GABA delta receptor. Dutch children also participated.

In a previous study in which all participants received gaboxadol, clear positive effects were measured on daily functioning. In the current study, a lottery was done between gabaxadol and placebo. The results showed an improvement in both the children who received placebo and those who received gabaxadol. So there was no improvement with the gabaxadol. There were also no serious side effects. This again shows that a study with a placebo group is really important to know for sure whether a treatment is effective.

We thank the participants and their parents. The article with all the results has now been published. Click here to read the article (link valid until October 15)

August 29, 2023

ZEN study

Met de ZEN studie proberen we te onderzoeken of hoge resolutie zenuwechografie gebruikt kan worden voor het onderzoeken van de zenuwen van mensen met neurofibromatose type 1. Ook onderzoeken we of we veranderingen over de tijd kunnen meten.
January 26, 2023

NEPTUNE TRIAL

Phase 3 clinical study of the effect of the drug OV101 (Gaboxadol) in children with Angelman Syndrome
November 11, 2020

EXCEL TRIAL

Phase 2 and 3 clinical study of the effect of Lamotrigine on cognition in patients with NF1
November 11, 2020

COVANT STUDY

Cognitive variability in NF1 and TSC monozygotic twins
November 11, 2020

GWPCARE6 TRIAL

Phase 3 clinical study of the effect of Cannabidiol on epilepsy in patients with TSC
November 11, 2020

RAPIT TRIAL

Phase 2 and 3 clinical study of the effect of the drug Sirolimus in children with TSC.
November 11, 2019

RATE TRIAL

Fase 2 en 3 klinische studie naar het effect van het medicijn Sirolimus in kinderen met TSC.
November 11, 2016

SIMCODA TRIAL

Phase 3 clinical study of the effect of the drug Simvastatin in children with NF1
November 11, 2013

NFSIMVA TRIAL

Phase 3 clinical study of the effect of the drug Simvastatin in patients with NF1
November 11, 2008