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?
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?
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.