According to the European Huntington's Disease Network, " Huntington's Disease is a rare, hereditary , degenerative disorder of the brain that was first described by George Huntington". Please find more information on the EHDN's website.
GUIDELINES RELEVANT FOR CHOREA
- Leitlinie „Chorea“ der Dt. Ges. f. Neurologie (DGN) in Zusammenarbeit mit der Dt. Ges. f. Psychiatrie, Psychotherapie und Nervenheilkunde (DGPPN) und der Ges. f. Humangenetik (GfH)
- Protocole National de Diagnostic et de Soins (PNDS) Maladie de Huntington, Centre de Référence National sur la maladie de Huntington Août 2015
- Physiotherapy: Physiotherapy clinical guidelines for Huntington’s disease, Lori Quinn & Monica Busse*; On behalf of the European Huntington’s Disease Network Physiotherapy Working Group Neurodegenerative Disease Management Vol. 2, No. 1, Pages 21-31 , DOI 10.2217/nmt.11.86 Guidelines on diagnosis and management are in preparation by the Movement Disorders Society in collaboration with EAN and by the EHDN.
- Burgunder, J.-M. (2013). Recent advances in the management of choreas.Therapeutic Advances in Neurological Disorders, 6(2), 117–127. doi:10.1177/1756285612471700
- Treatment approach for HD
Registry is a multi-centre, multi-national, European (with some associate partners wordlwide) observational study of Huntington’s disease sponsored by CHDI, a non-profit organisation that supports a variety of research projects seeking to find treatments for HD.
The major aims of Registry include:
- Obtain natural history data on a wide spectrum of individuals affected by HD
- Relate clinical characteristics with genetic factors (‘genetic modifiers’), data derived from the study of body fluids (blood and urine, also called ‘wet biomarkers’) and imaging data (‘dry biomarkers’)
- Expedite identification and recruitment of participants for clinical trials
- Plan for future research studies (observational and interventional trials aimed at better symptom control, and postponing the onset or slowing the progression of HD)
- Develop novel measures to track and/or predict disease onset and progression, as well as improve the existing tools
Enroll-HD is is now replacing Registry in a global setting, including centres in North and South America Oceania and with planned extension in China.
The aims are:
- to better understand Huntington’s disease as it happens in people, to give us insights into developing new drugs
- to improve the design of clinical trials to give us clear answers more quickly. We want better, smarter, faster clinical trials so that we can move as quickly as possible to find the treatments that work
- to improve clinical care for HD patients by identifying the best clinical practices across all Enroll-HD sites around the world and then working to ensure that all families get that standard of care
A comprehensive set of scales has been established for Huntington’s disease, they are often used for choreas of other origins. They include the dimensions of motor, cognitive and behavioural signs and symptoms. Training and Online Certification is available, they are now further developed in the context of the Enroll-HD platform.