European Huntington's Disease Network

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European Huntington's Disease Network
European Huntington's Disease Network (logo).png
Abbreviation Euro-HD Network, EHDN
Formation 2003
Type International Network
Legal status Constitution
Purpose "to advance knowledge of Huntington's disease"[1]
Headquarters Ulm, Germany
Region served
Europe
Official language
English & 13 others
President
Prof G Bernhard Landwehrmeyer
Affiliations
  • CHDI Foundation (funder)
  • Huntington Study Group (US partner organisation)
Website ehdn.org

The European Huntington's Disease Network (Euro-HD or EHDN) is a Europe-wide network of professionals and people affected by Huntington's disease, who collaborate to organise and perform research into the condition, and improve the care of HD-affected individuals.[2]

Huntington's disease (HD) is an incurable, genetically inherited degenerative brain condition that causes progressive impairment of motor function and cognitive decline and psychiatric symptoms.

EHDN was founded in 2003 and is financially supported by the CHDI Foundation.[2]

EHDN provides an infrastructure for multi-national observational studies and interventional clinical trials in HD; organises biannual plenary meetings attended by professionals and HD family members; supports a range of working groups focusing on aspects of the disease; and provides endorsement and seed funding for individual research projects.[2] At December 2011, EHDN had over 1000 regular members in 26 countries.[3] EHDN's activities are governed by an elected Scientific and Bioethics Advisory Committee and an Executive Committee.[2]

The core project of EHDN is the REGISTRY study, a multi-national observational project that aims to study the natural history of HD and expedite recruitment of suitable volunteers into clinical trials.[4] At December 2011, REGISTRY had enrolled over 7700 subjects in 145 sites,[5] and generated nine peer-reviewed publications.[6][7][8][9][10][11][12][13][14] The MermaiHD study of pridopidine and HORIZON study of latrepirdine in Huntington's disease were coordinated in Europe by EHDN.[15][16]

References[edit]

  1. ^ "Constitution". EHDN. Retrieved 19 December 2011. 
  2. ^ a b c d "About EHDN". EHDN. Retrieved 19 December 2011. 
  3. ^ "Membership". EHDN. Retrieved 19 December 2011. 
  4. ^ "REGISTRY study: description". EHDN. Retrieved 19 December 2011. 
  5. ^ "REGISTRY study: enrolment". EHDN. Retrieved 19 December 2011. 
  6. ^ Saft, C; Epplen, JT; Wieczorek, S; Landwehrmeyer, GB; Roos, RA; de Yebenes, JG; Dose, M; Tabrizi, SJ; Craufurd, D; REGISTRY Investigators of the European Huntington's Disease Network; Arning, L (Oct 4, 2011). "NMDA receptor gene variations as modifiers in Huntington disease: a replication study". PLoS Currents. 3: RRN1247. PMC 3186947Freely accessible. PMID 21989477. doi:10.1371/currents.RRN1247.  open access publication – free to read
  7. ^ Quarrell, OW; Handley, O; O'Donovan, K; Dumoulin, C; Ramos-Arroyo, M; Biunno, I; Bauer, P; Kline, M; Landwehrmeyer, GB (January 2012). "Discrepancies in reporting the CAG repeat lengths for Huntington's disease". European Journal of Human Genetics. 20 (1): 20–6. PMC 3234505Freely accessible. PMID 21811303. doi:10.1038/ejhg.2011.136. 
  8. ^ López-Sendón, JL; Royuela, A; Trigo, P; Orth, M; Lange, H; Reilmann, R; Keylock, J; Rickards, H; Piacentini, S; Squitieri, F; Landwehrmeyer, B; Witjes-Ane, MN; Jurgens, CK; Roos, RA; Abraira, V; de Yébenes, JG; European HD Network (July 2011). "What is the impact of education on Huntington's disease?". Movement disorders : official journal of the Movement Disorder Society. 26 (8): 1489–95. PMID 21432905. doi:10.1002/mds.23385. 
  9. ^ Vaccarino, AL; Anderson, K; Borowsky, B; Duff, K; Giuliano, J; Guttman, M; Ho, AK; Orth, M; Paulsen, JS; Sills, T; van Kammen, DP; Evans, KR; PREDICT-HD and REGISTRY Investigators Coordinators (April 2011). "An item response analysis of the motor and behavioral subscales of the unified Huntington's disease rating scale in huntington disease gene expansion carriers". Movement disorders : official journal of the Movement Disorder Society. 26 (5): 877–84. PMC 3157755Freely accessible. PMID 21370269. doi:10.1002/mds.23574. 
  10. ^ Busse, M; Al-Madfai, DH; Kenkre, J; Landwehrmeyer, GB; Bentivoglio, A; Rosser, A; European Huntington's Disease Network (Jan 21, 2011). "Utilisation of Healthcare and Associated Services in Huntington's disease: a data mining study". PLoS Currents. 3: RRN1206. PMC 3034233Freely accessible. PMID 21304753. doi:10.1371/currents.RRN1206.  open access publication – free to read
  11. ^ Orth, M; European Huntington's Disease Network; Handley, OJ; Schwenke, C; Dunnett, S; Wild, EJ; Tabrizi, SJ; Landwehrmeyer, GB (December 2011). "Observing Huntington's disease: the European Huntington's Disease Network's REGISTRY". Journal of neurology, neurosurgery, and psychiatry. 82 (12): 1409–12. PMID 21097549. doi:10.1136/jnnp.2010.209668. 
  12. ^ Orth, M; Handley, OJ; Schwenke, C; Dunnett, SB; Craufurd, D; Ho, AK; Wild, E; Tabrizi, SJ; Landwehrmeyer, GB; Investigators of the European Huntington's Disease Network (Sep 28, 2010). "Observing Huntington's Disease: the European Huntington's Disease Network's REGISTRY". PLoS Currents. 2: RRN1184. PMC 2947793Freely accessible. PMID 20890398. doi:10.1371/currents.RRN1184.  open access publication – free to read
  13. ^ Boustany, Jr, CW; Murphy, GW; Hicks, Jr, GL (June 1991). "Mitral valve replacement in idiopathic hypereosinophilic syndrome". Annals of Thoracic Surgery. 51 (6): 1007–9. PMID 2039298. doi:10.1016/0003-4975(91)91034-S. 
  14. ^ Aziz, NA; Jurgens, CK; Landwehrmeyer, GB; EHDN Registry Study Group; van Roon-Mom, WM; van Ommen, GJ; Stijnen, T; Roos, RA (Oct 20, 2009). "Normal and mutant HTT interact to affect clinical severity and progression in Huntington disease". Neurology. 73 (16): 1280–5. PMID 19776381. doi:10.1212/WNL.0b013e3181bd1121. 
  15. ^ de Yebenes, JG; Landwehrmeyer, B; Squitieri, F; Reilmann, R; Rosser, A; Barker, RA; Saft, C; Magnet, MK; Sword, A; Rembratt, A; Tedroff, J; for the MermaiHD study investigators (December 2011). "Pridopidine for the treatment of motor function in patients with Huntington's disease (MermaiHD): a phase 3, randomised, double-blind, placebo-controlled trial". Lancet neurology. 10 (12): 1049–1057. PMID 22071279. doi:10.1016/S1474-4422(11)70233-2. 
  16. ^ "HORIZON Study". EHDN. Retrieved 19 December 2011. 

External links[edit]