From bed to bench and back to the future: Huntington's disease
- Startdatum:
- 26 oktober 2018
- Cursusduur:
- 1 dag
- Werkzaam als:
- Medisch specialist
Accreditaties
- NVN:
- 5
- VKGN:
- 6
- ABC 1:
- 6
This course provides an overview of future trends in healthcare and therapy of neurodegenerative disorders based on experience in Huntington’s disease gathered over the last 40 years.. Speakers will address the developments that have been made in the care of patients with chronic disease in their final stages and the care of individual patients during the course of their disease. Also the patient within the family system as a network of care will be discussed.
In 1978 the diagnosis of Huntington’s disease was made on the clinical picture of chorea and a positive family history, hopefully confirmed earlier by examination of the morphology of the brain of a clinical certain case. A lot of progress has been made after the finding of the linkage in 1983 and the gene in 1993. From then on, the whole new field of premanifest testing in neurological disorders started. It gave a huge input into basic research with only one aim: to find a useful therapy. The steps made in the lab must be transferred to the clinic. The question is how to do that properly, with the restricted amount of money and clinical available patients. The field is eager to participate so the clinical trials must be structured very rigid so that the maximum result comes out each trial. The rarity of the disease hinders the progress, the other side of the coin is that it made a strong point by organizing a worldwide collaboration possible, which otherwise never could have been reached.
This day will also illustrate how other chronic diseases can learn from these findings and vice versa.
This course is endorsed by the Dutch Society for Movement Disorders.
Speakers
- Prof.dr W.P. Achterberg, PHEG, LUMC
- Dr N. A. Aziz, LUMC, department of Neurology/DZE, Bonn (D)
- Prof.dr B.R. Bloem, Parkinson Center Nijmegen, Radboud University
- Dr S.J. Booij, CWZ Hospital Nijmegen
- D. Craufurd, department of Genetics, University of Manchester (UK)
- Prof. A. Durr, Pitié-Salpetrière, Paris (F)
- Prof.dr J.J. van Hilten, department of Neurology, LUMC
- Dr K. Kieburtz, University Rochester Medical Centre, Rochester (USA)
- Prof.dr G. Bernhard Landwehrmeyer, FRCP University Hospital Department of Neurology, Ulm (D)
- Dr R. Reilmann, George-Huntington Institute, Münster (D)
- Dr W.M.C. van Roon-Mom, department of Clinical Genetics. LUMC
- Prof.dr A. Tibben, department of Clinical Genetics, LUMC
- Prof. S. Tabrizi, Huntington's Disease Center at University College London (UK)
- Prof.dr J.J.G.M. Verschuuren, department of Neurology, LUMC
09:30 | Registration and coffee |
Chair: Willeke van Roon | |
09:55 | Welcome and introduction |
10:00 | Palliative care or euthanasia |
Suzanne Booij | |
10:20 | Top care development in nursing homes |
Wilco Achterberg | |
10:40 | Can every disease have its own network of care? |
Bas Bloem | |
11:05 | Tea/coffee break |
Chair: Aad Tibben | |
11:20 | Development of global clinical platforms: HD as a model |
Bernard Landwehrmeyer | |
11.45 | Animal models for neurodegeneration |
Ralf Reilmann | |
12.10 | How to link the lab to the clinics |
Ahmad Aziz | |
12.30 | Lunch |
Chair: Bob van Hilten | |
13.20 | Psychiatric aspects of at-risk testing |
David Craufurd | |
13:40 | How monogenetic is Huntington’s disease |
Alexandra Durr | |
14:05 | Drug approvals for rare disorders- new trends in clinical trials |
Karl Kieburtz | |
14:30 | The future clinics of Huntington’s disease |
Sarah Tabrizi | |
15:00 | Closing remarks |
Jan Verschuuren | |
15:05 | Tea/coffee break |
Walk to the Academy Building, Rapenburg 70 (20 min) | |
16:15 | Farewell lecture (Academy Building) |
Raymund Roos | |
17:00 | Drinks in the faculty club |
LUMC
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