MINDDS Patient care survey underway


We are a group of bachelor students enrolled in the honours programme at Maastricht University studying at the Faculty of Health Medicine and Life Sciences (FHML). We are a diverse group of students studying Medicine, European Public health, Biomedical Sciences and Health Sciences.

We are conducting a research project to understand how care for patients with CNVs is organised, whether patients’ expectations are met and how care centres and regions may use these data to optimise their care for these patients. The research is carried out in different countries across Europe. We compare how the care is organised in these different regions and how this influences patients’ experiences. With this comparison we aim to find the specific beneficial aspects of care in each country.

We were honoured to be invited to the MINDDS conference in Cardiff where we presented some of our preliminary findings which already highlighted some areas of improvement in the care of patients with CNVs. However, we still need more data to provide complete results. We made a survey which was spread amongst the MINDDS network. This way we get the insight of health professionals and how they perceive the care they provide. If you have not done so already, we would appreciate it if you took ten minutes of your time to fill in our survey, which would help us a great deal.

Here is the link to the survey:


Understanding rare neurodevelopmental disorders (NDD) has the potential drive major new therapies for the common NDD of schizophrenia and Autism Spectrum Disorder (ASD).