BRAINmodel PhD student Sietske van Till (Erasmus MC) has published an article in the magazine ZeldSamen about her research towards the ethical implications of the use of stem cells to study neurodevelopmental disorders. ZeldSamen is a dutch patient organization offering information, contact and recognition for parents after the diagnosis of a rare genetic syndrome. They collaborate within the BRAINmodel project as stakeholders.
To gain more insight in parents’ overall experiences and their moral perspectives on stem cell research, Sietske van Till and Dr. Eline Bunnik started an interview study among parents of children with the Kleefstra-syndrome or an STXBP1 mutation. In her article, Sietske explains more about the BRAINmodel study, the interviews and how to participate in this research.
Starting 2023, we will initiate the clinical research workpackages within the BRAINmodel project, in which multiple children with SNAREopathies or Chromatinopathies will be investigated, see also our flyer. If you are interested in participating, please contact [email protected].