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Euro Huntington's disease network [logo]
EHDN2018 DOENÇA GRUPO PROJECTS ENTRAR
 
 
  
The Project - European HD Network -
--->Notícias
[-]O projecto
--->Patrocínio
--->[-]Comité Executivo
--->Arnesen
--->Blumenstein
--->Humbert
--->Jones
--->Kulisevsky
--->Mariotti
--->Muehlbaeck
--->Reilmann
--->Roos
--->Rosser
--->Weydt
--->Capper-Loup
--->Feihle
--->Levey
--->McLean
--->Public Documents
--->[-]Writing Committee Strategic ...
--->Dates
--->[+]Comité Revisão Científico
--->Coordenação Central
--->Coordenação Idioma
--->Fellowship Programme
--->[-]Constitution
--->Article 1
--->Article 2
--->Article 3
--->Article 4
--->Article 5
--->Article 6
--->Article 7
--->Article 8
--->Article 9
--->Article 10
--->Article 11
--->Article 12
--->Documents
--->[+]Membros
[-]Centros
--->[-]Austria
--->Coordination
--->HD Associations
--->Graz
--->Innsbruck
--->[+]Salzburg
--->[+]Vienna-Uni
--->[-]Belgium
--->Coordination
--->HD Associations
--->Huntington Liga
--->Ligue Huntington
--->Antwerpen
--->[+]Bierbeek
--->Brussel - VUB
--->Bruxelles - Saint-Luc
--->Bruxelles - Erasme (UCL)
--->Charleroi
--->Leuven
--->Liège (Luik)
--->[-]Czech Republic
--->[+]Coordination
--->[+]HD Associations
--->Brno
--->Ostrava
--->Olomouc
--->Prague
--->[+]Denmark
--->[-]Finland
--->Coordination
--->HD Associations
--->Åland
--->Helsinki-HUH
--->Helsinki-Vaestoliitto
--->Kuopio
--->Oulu
--->Tampere
--->Turku-Suvituuli
--->Turku-TUH
--->[-]France
--->Coordination
--->HD Associations
--->Amiens
--->Bordeaux
--->[-]Clermont-Ferrand
--->[-]Documents
--->Informed Consent
--->ERB Template
--->ERB
--->Lille
--->Documents
--->[+]Rouen
--->Strasbourg
--->[-]Documents
--->[-]Germany
--->Coordination
--->HD Associations
--->Standard of Care
--->Aachen
--->Berlin
--->Bochum
--->Bonn
--->Dresden
--->Dinslaken
--->Düsseldorf
--->Erlangen
--->Freiburg
--->Hamburg
--->Hannover
--->HH-Heiligenhafen
--->Itzehoe
--->Marburg-Uni
--->[+]Lübeck
--->Marburg-KPP
--->Mainz
--->Munich
--->München-LMU
--->Münster
--->Rostock
--->Taufkirchen
--->Ulm
--->[+]Würzburg
--->[+]Ireland
--->[-]Italy
--->Coordination
--->Contacts IT
--->HD Associations
--->Bari
--->Bologna
--->Brescia
--->Cagliari
--->Contacts
--->Florence
--->Genoa
--->Milan
--->Napels
--->Pisa
--->Pozzilli
--->Rome
--->Rome-LIRH
--->Rome-Sant'Andrea
--->[-]Netherlands
--->Coordination
--->HD Associations
--->Enschede
--->Groningen
--->Leiden
--->[-]Maastricht
--->[+]Documents
--->Nijmegen
--->[-]Norway
--->Coordination
--->HD Associations
--->Bergen
--->Oslo
--->Trondheim
--->[-]Poland
--->Coordination
--->[+]HD Association
--->Gdansk
--->Katowice
--->[+]Krakow
--->Poznan
--->Warsaw - MU
--->Warsaw - IPiN
--->[+]Portugal
--->[+]Russia
--->[-]Spain
--->Coordination
--->HD Associations
--->Alicante
--->Badajoz
--->Barcelona - Bellvitge
--->Barcelona - Clinic i Provincia...
--->Barcelona - Mutua de Terra...
--->Barcelona - Santa Creu i Sa...
--->Barcelona - Merced
--->Bilbao
--->Burgos
--->Canaries
--->Granada
--->Fuenlabrada
--->[+]Madrid-BTCIEN
--->Madrid - Clínico
--->Madrid - FJD
--->Madrid - RyC
--->Murcia
--->Oviedo
--->Palma de Mallorca
--->Pamplona
--->Santiago
--->Sevilla
--->Sevilla-HUVRocio
--->Sevilla-St-Ana
--->Valencia
--->Zaragoza
--->[-]Sweden
--->Coordination
--->HD Associations
--->Åland
--->Goteborg
--->Lund
--->Stockholm-Ersta
--->Stockholm-Karolinska
--->Umea
--->Uppsala
--->[+]Switzerland
--->[-]U.K.
--->Coordination
--->HD Associations
--->Links
--->[+]UKHDN
--->Standard of Care
--->Aberdeen
--->[-]Ayr
--->Dates
--->Belfast
--->Birmingham
--->[+]Blandford Forum
--->Bristol
--->Cambridge
--->Cardiff
--->Dundee
--->Edinburgh
--->Exeter
--->Fife
--->Forth Valley
--->Glasgow
--->Gloucester
--->Hull
--->Inverness
--->Launceston
--->Leeds
--->Leicester
--->Liverpool
--->London - Guy's Hospital
--->London - Hammersmith
--->London - NHNN
--->London - Royal Hospital
--->London - St. George´s
--->Manchester
--->Newcastle-Upon-Tyne
--->[-]Northampton
--->[+]Documents
--->Nottingham
--->Oxford
--->[+]Plymouth
--->Poole
--->Preston
--->Reading
--->[+]Sheffield
--->Southampton
--->Stoke-on-Trent
--->Swindon
--->Wrexham
--->[-]Outside Europe
--->[+]Seoul
--->[+]Singapore
--->Sydney
[-]Grupos de trabalho
--->[+]Advanced HD
--->[-]Fenótipo Comportamental
--->Dates
--->[+]Meetings
--->[+]Psycho appr. & interv. Sub...
--->[-]Biological Modifiers
--->Dates
--->[+]Meetings
--->[-]Biomarcadores
--->[+]Dates
--->[-]Meetings
--->Meeting 2005/01
--->Meeting 2005/09
--->Meeting 2006/05
--->Meeting 2008/09
--->Meeting 2010
--->[-]Banco de Cérebros
--->[+]Dates
--->[+]Meetings
--->[-]Fenótipo Cognitivo
--->[+]Dates
--->[+]Meetings
--->[+]Environmental Modifiers
--->[-]Functional Ability
--->Dates
--->[+]Meetings
--->[-]Genetic Testing
--->[+]Dates
--->[-]Meetings
--->Meeting 2008/05
--->Meeting 2008/09
--->Meeting 2009/06
--->Meeting 2010/05
--->Meeting 2011/03
--->Meeting 2012
--->Meeting 2014/01
--->Meeting 2014/09
--->Meeting 2016/09
--->Conference Call 2017/05
--->Meeting 2018/09
--->[-]Modificadores Genéticos
--->[+]Dates
--->[+]Meetings
--->[+]Economia da Saúde
--->[+]Imagiologia
--->[+]DH Juvenil
--->[-]Fenótipo Motor
--->[+]Dates
--->[+]Meetings
--->[-]Neuroprotecção
--->[+]Dates
--->[+]Meetings
--->[+]Physiotherapy
--->[-]Qualidade de Vida
--->[+]Dates
--->[+]Meetings
--->[-]Padrão de Cuidados
--->[+]Dates
--->[+]Meetings
--->[+]Dieticians
--->[+]SALT
--->[+]Dental care
--->[+]Occupational
--->[+]Terapia Cirúrgica
--->[+]Terapia Sintomática
--->[+]Young Adults
[-]Eventos
--->[-]EHDN 2018
--->Announcement
--->Introduction
--->Programme Fri
--->Programme Sat
--->Programme Sun
--->Additional Meetings
--->Registration
--->Photos
--->Sponsoring/Partners
--->CME points
--->HD on the Move
--->Travel Information
--->Hotel booking
--->Flight booking
--->ACV Security Checks
--->About Vienna
--->Useful information
--->Contacts
--->Reimbursement
--->[+]Abstract Submission
--->Documents
--->Feedback
--->[-]EHDN 2016
--->Announcement
--->Introduction
--->Registration
--->Programme Fri
--->Programme Sat
--->Programme Sun
--->Additional Meetings
--->Floor plan
--->[+]Overduin Registration
--->CME points
--->Sponsoring
--->Travel Information
--->Hotel booking
--->Social activities
--->Reimbursement
--->[+]Abstract Submission
--->Contacts
--->Documents
--->Feedback
--->EHDN 2014
--->Announcement
--->Introduction
--->Registration
--->Programme Fri
--->Programme Sat
--->Programme Sun
--->Additional Meetings
--->CME points
--->Sponsoring
--->Travel Information
--->Hotel Booking
--->Reimbursement
--->Social Activities
--->[+]Abstract Submission
--->Contacts
--->Feedback
--->[-]EHDN 2012
--->Introduction
--->Announcement
--->Programme Fri
--->Programme Sat
--->Programme Sun
--->Additional Meetings
--->Important Dates
--->Registration
--->[+]Travel & Accommodation
--->[+]EHA Registration
--->EHA Programme
--->Reception Dinner
--->About Stockholm
--->[+]Abstract Submission
--->Reimbursement
--->[+]Documents
--->Contacts
--->Feedback & Evaluation
--->[-]EHDN 2010
--->Introduction
--->Programme I
--->Programme II
--->Additional Meetings
--->Registration
--->EHA Programme
--->[+]EHA Registration
--->Plenary Dinner
--->Social Programme
--->Important Dates
--->[+]Abstract Submission
--->Reimbursement
--->Hotel Booking
--->[+]Travel and Location
--->[-]About Prague
--->Cultural Entertainment
--->Sightseeing
--->Food & Drink
--->Documents
--->Committees
--->Contact
--->Feedback & Evaluation
--->[-]EHDN 2008
--->Programme
--->Additional Meetings
--->EHA Programme
--->Social Programme
--->Kids Programme
--->Important Dates
--->Voting
--->Reimbursement
--->[+]Registration
--->[+]Abstract Submission
--->Evaluation & Feedback
--->[+]Travel and Location
--->[+]About Lisbon
--->[+]Documents
--->Committees
--->Contact
--->[+]EHDN 2007
--->[+]EHDN 2006
--->[-]EHDN 2005
--->Final Programme
--->Plenary Dinner
--->Registration
--->Working Groups
--->Meeting Venue
--->Manchester
--->Evaluation & Feedback
--->[+]EHDN 2004
[+]Comunicação
--->Ofertas de trabalho

Quais são os objectivos da Rede Europeia da DH?

  • A Rede Europeia da DH deve fornecer um plataforma para profissionais, pessoas afectadas pela DH e seus familiares para facilitar o trabalho conjunto em toda a Europa
  • A Rede Europeia da DH deve facilitar estudos sobre a história natural da doença e ensaios terapêuticos cumprindo os mais exigentes padrões de qualidade(‘Good Clinical Practice’ = GCP) deste modo ajudando no caminho para a cura da DH
  • A Rede Europeia da DH deve ser uma rede em que todos os participantes envolvidos possam ter iniciativa, propôr, conduzir e publicar estudos.

How did the idea of a European HD Network come about?

  • An interventional trial testing Riluzole in more than 500 patients in early stages of HD in 9 countries throughout Europe (‘European Huntington Disease Initiative’ = EHDI-Trial) demonstrated that large scale studies on HD can be done in Europe
  • Since the EHDI-Trial calls for an observation period of 3 year and the last patients will have completed their observation period end of April 2004, an infrastructure for clinical trials on HD in Europe independent of a specific industrial sponsor was highly desired
  • A private American Foundation, the High-Q Foundation, decided to sponsor ‚The Huntington Project‘, a 10-year endeavour to speed up the process of finding ways to improve the natural course of HD
  • The idea of an Euro-HD Network was kickstarted at the Gordon Research Conference at Il Ciocco, Tuscany, in May 2003

Quem financia rede europeia da DH ?

  • Uma fundação privada americana, High-Q, no contexto do patrocínio 'The Huntington Project', projecto de 10 anos

Como está organizada a rede Europeia da DH?

  • Centros
  • Grupos de trabalho
  • Centros de coordenação ogranizados por idioma
  • Coordenação Central incluindo informação de tecnologia (IT)
  • Comité Executivo
  • Comité de Revisão Científica
 

O que é que a rede europeia da DH fornece?

  • Uma infra-estrutura para ensaios europeus de grandes dimensões na DH (base de dados, ferramentas-IT, monitorização de pessoal etc.) .
  • Uma plataforma de IT para ferramentas de comunicação (na língua nacional respectiva) e ensaios electrónicos.
  • Um fórum para uma melhor cooperação próxima entre cientistas básicos e clínicos
  • Um suporte acessível (na língua nacional) para apoiar o centros da rede através dum coordenador de idioma

O que a rede europeia da DH NÃO fornece?

  • Fundos para projectos individuais.
  • MAS: no caso de aprovação duma proposta pelo Conselho de Directores, uma carta de patrocínio especificando os recursos que a rede europeia da DH disponibiliza ao projecto de modo a facilitar o fincanciamento por organizações nacionais ou internacionais  (EU, HDF, High-Q etc) 

Primeiros passos ...

  • Montar a REDE e ser aprovada pelas autoridades locais euopeias
  • Montar os centros de coordenação
  • Iniciar estudos centrais REGISTRY em todos os centros
  • Iniciar estudos bem definidos e patrocinados em centros seleccionados
    - Extensão Europeia do PREDICT
    - Euro-HD-Transplant-2
    - Estudos de Fase 2 de moléculas promissoras
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