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Euro Huntington's disease network [logo]
About EHDN REGISTRY -

Description

The following section provides background information on the REGISTRY project. It includes details about its aims, why it is important and how it relates to other research into Huntington’s disease.
  • What is REGISTRY?
  • What are the aims of REGISTRY?
  • Why is REGISTRY important?
  • Are there any links to other projects (EHDN- or worldwide)?
  • What are the benefits of participating in REGISTRY?
  • What types of studies are performed?
  • read more .....

Enrolment

The topics covered in this section include information on who can take part in REGISTRY, what it involves and the type of data that is collected. There is also information on how REGISTRY data is processed and stored together with an explanation of participant confidentiality and data protection 
  • How many countries and study sites are involved? How many participants are currently enrolled?
  • Who is eligible to participate in REGISTRY?
  • How are participants recruited?
  • Where are participants examined?
  • What kind of data is collected?
  • What kinds of tests and assessments are performed?
  • Confidentiality and data protection
  • read more .....
 

Organisation

This section describes the infrastructure in place to provide the successful conduct of the REGISTRY project. The following topics describe the organisation and coordination involved in REGISTRY.
  • Central Coordination
  • Language Area Coordination
  • REGISTRY Steering Committee
  • Working Groups
  • read more .....

Contacts

Further information can be obtained by contacting the Language Area Coordination team or the REGISTRY Project Manager:
Jenny
Dr. Jenny Townhill
Central Coordination UK IE
Cardiff University, School of Biosciences
Postal address: Museum Avenue
CF10 3AX Cardiff
U.K.
phone: +44 779 1985313
fax: +44 29 20876749
e-mail: 
homepage: www.cf.ac.uk