Movement Disorders

The Leiden Huntington Disease center has a leading role in the European Huntington Disease Network as one of the largest clinical centers for Huntington Disease in Europe, with more than 500 participants included in a worldwide observational study (Enroll-HD). Due to the large number of patients that are seen, a great deal of knowledge has been obtained with respect to epidemiology, clinical aspects and natural history of the disease, diagnostic workup, treatment and follow-up, which are used for the benefit of the patient.

The Leiden HD center participates in multiple national and international, investigator-initiated (e.g. EHDN seed fund, HEALTHE-RND), CHDI funded (Enroll-HD with > 500 participants), IMI and EFPIA funded (e.g. IDEA-FAST), and industry-initiated clinical trials (e.g. GEN HD1, Proof-HD). Patients can opt to participate in research studies, clinical trials or several biobank initiatives, like the LUMC Biobank. We actively pursue partnership with stakeholders, such as patient organizations, regulators and pharmaceutical companies. Several clinicians and researchers participate and contribute to annual patient gatherings and work together with the patient organizations (Vereniging van Huntington) in providing optimal information to the patients, general practitioners and colleagues in writing and online. The Huntington Disease research group of the LUMC published more than 140 PubMed registered papers in the last 7 years.

Our current projects:

Biobank HD: A large amount of body material (including blood) is needed for future research. Substances (biomarkers) can be discovered in this body material that contribute to drug development and/or provide more knowledge about the origin and course of the disease.

Brainbank HD: A collection of over 250 HD brains is stored in the HD brain bank of the LUMC. Brain material is used for a wide spectrum of research questions, from molecular pathogenesis to translational research methods, including imaging. Researchers from all over the world can apply for the use of this material.

HD-eHelp: This study focusses on  developing an eHealth application for people with Huntington's disease and their partners.

HD-JUNIOR: Registry for patients with juvenile onset Huntington’s Disease (age at onset < 21 years). Our aim is to locate JHD patients in the Netherlands to facilitate participation in future clinical trials and to analyze and compare clinical data from JHD patients with adult onset HD patients.

HD-MED: A longitudinal, observational study to assess medication use, medication efficacy and the role of pharmacogenetics in Huntington’s Disease.

HD-MRI: The aim of this study is to determine the association between iron accumulation and inflammatory reactions in the brain and how these relate to the clinical characteristics and disease progression in HD. Possibly, providing a new biomarker and insights essential for the development of new drugs.

HD-PAIN: The aim of this study is to gain more insight in the prevalence, causes and impact of pain in HD, and to improve pain scales in the more advanced stages of HD.

HD-WORK: The aim of this research is to find out which symptoms of Huntington's disease are responsible for functional changes at work.

The centre for Parkinson’s disease in the LUMC is a tertiary referral centre with a longstanding track-record in care and research in PD. The research group focuses on the following lines of research.

Our current projects:

1. Profiling Parkinson’s disease: an observational, multicenter, longitudinal study in which 1250 PD patients with a disease duration of <10 years, as well as 265 age- and gender-matched controls will be recruited by a collaborative network in the Netherlands. ProPark integrates longitudinal clinical characteristics and biomarkers into a ‘ParkCode’. The code is used to define between-patient differences in phenotype expression, treatment response and susceptibility to adverse drug reactions. This study aims to guide towards a more tailored use of current available symptomatic treatment and the development of disease-modifying approaches.
2. Deep brain stimulation in PD; a collaboration with the HAGA Hospital and the LUMC is a tertiary referral center for Deep Brain Stimulation (DBS) in the Netherlands. Research focus:

• Predictors of DBS outcome using clinical, quantitative EEG markers (using artificial intelligence), and Brain-MRI markers.
• Development of new technology to optimize electrode positioning
• Development of telemedicine using local field potentials for the detection of motor fluctuations.

3. Host – microbiome interactions in PD, a collaboration with the department of Microbiology and the Leiden Fecal transplant bank. The role of The gut-brain axis connects the microbiota of the gastro-intestinal tract with functions of the brain and provides unique opportunities for innovative interventions to study the role of microbiota in mechanisms underlying the adverse drug responses and the disease. Research focus:

• The safety of fecal microbiota transplantation (FMT) in patients with PD.
• The role of microbiota in the development of motor complications, a common and disabling adverse drug response which affects >50% of PD patients within 5 years of levodopa treatment.  
• The role of microbiota in the pharmacokinetics of Parkinson medication.
• neuro-inflammatory pathways involved in the pathobiology of PD
• The develop new treatments to modulate disease progression.