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:

Olivia Handley, PhD
Registry Project Manager, REGISTRY Steering Committee University College of London, Institute of Neurology, Queen Square
Postal address:		Box 104, Institute of Neurology WC1N 3BG London U.K.
phone:		+44 20 7692 2615
fax:		+44 20 7611 0129
e-mail:
homepage:		www.ion.ucl.ac.uk

Sub-Project Developement

Drs Marleen van Walsem
Nordic Coordination Co-Investigator Cognitive Rater Rikshospitalet, Senter for Sjeldne Diagnoser
Postal address:		Forskningsveien 3B 0027 Oslo Norge
phone:		+47 23075349
fax:		+47 23075350
e-mail:

Lists of participating sites and members of REGISTRY Steering Committee.