From bed to bench and back, to the future: Huntington's disease
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...Prijzen
Beroepen
Competenties
Omschrijving
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.
This day will also illustrate how other chronic diseases can learn from these findings and vice versa.
Inleiding
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.
Programma
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 mondial platforms: HD as a model
Bernard Landwehrmeijer
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
How many patients to include in a clinical trial of a neurodegenerative disorder?
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 Academiegebouw, Rapenburg 70 (20 min)
16:15
Farewell lecture (Academiegebouw)
Raymund Roos
17:00
Drinks in the faculty club
Boerhaave Nascholing