I am a neurologist at Maastricht University Medical Centre (MUMC), in Maastricht, the Netherlands. I specialise on movement disorders and Huntington’s disease (HD) in particular. I completed my study and training as a neurologist at Leiden University and Leiden University Medical Centre, respectively. I have been working with HD patients and their family members since 2011 at MUMC. Since 2015, I am the head of the national expert centre for HD in Maastricht, acknowledged by the Dutch Ministry of Health and Welfare.
In my PhD work (Maastricht University), I focused on the controversies and pitfalls in diagnosing HD. I investigated the experiences of parenting a child with juvenile onset HD and searched for convincing evidence intermediate repeat sizes are able to cause HD. Both groups will be further investigated in the CUREQ consortium in which I am one of the co-applicants.
In parallel with my clinical work, I currently focus on three topics in HD: quality of life/care for patients and their families; fluid and radiological biomarker research and treatment of behavioural changes in HD. Furthermore, our expert centre participates in international HD cohort studies and trials.
I collaborate with HD researchers and clinicians internationally. Furthermore, I am lead facilitator of the problem behaviour working group, member of the juvenile Huntington’s Disease working group as well as the Scientific Bioethics Advisory Committee (SBAC) of the European Huntington’s Disease Network (EHDN).
Within the CUREQ consortium, I am one of the co-applicants and the daily supervisor of Anna van Hofslot who is responsible for the HD part of WP2. Furthermore, I am co-leader of WP3 together with Willeke van Roon-Mom.