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Euro Huntington's disease network [logo]
The Project - European HD Network -

What is the European HD Network about?

  • The European HD Network should provide a platform for professionals and people affected by HD and their relatives to facilitate working together throughout Europe
  • The European HD Network should facilitate natural history studies and interventional trials meeting high standards (‘Good Clinical Practice’ = GCP) thus helping on the road towards a cure of HD
  • The European HD Network should be a true network in that all participants involved can take a lead and propose, conduct and publish studies

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

Who finances the European HD Network?

  • A private American Foundation, High-Q, in the context of sponsoring 'The Huntington Project', a 10-year endeavor

How is the European HD Network organized?

  • Study sites
  • Working groups
  • Coordination centres organized according to language
  • Central coordination including information technology (IT) core facility
  • Executive Committee
  • Scientific and Bioethics Advisory Committee
 

What does the European HD Network provide?

  • An infrastructure for large scale clinical trials on HD throughout Europe (database, IT-tools, monitoring personal etc.)
  • An IT platform for communication tools (in the respective native languages) and e-trials
  • A forum for close cooperation of basic scientists and clinicians
  • Low threshold (native language!) support for study sites by language group coordinators

What does the European HD Network NOT provide?

  • Funding for individual projects
  • But: in case of approval of an application by the Board of Directors a letter of support specifying the resources of European HD Network made available to the project will be provided thus making funding through national or international funding organisations (EU, HDF, High-Q etc) more likely

First Steps ...

  • Set up IT and get approval by data security authorities throughout Europe
  • Set up coordination centres
  • Start up core study REGISTRY at all sites
  • Start up defined, sponsored studies at selected sites
  • - European extension of PREDICT
    - Euro-HD-Transplant-2
    - Phase 2 studies of promising compounds