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*REGISTRY - an observational study of the European Huntington's Disease Network (EHDN)*

*REGISTRY - an observational study of the European Huntington's Disease Network (EHDN)* - Registry

Status
Active, not recruiting
Phases
Unknown
Study type
Observational
Source
NL-OMON
Registry ID
NL-OMON38177
Enrollment
800
Registered
2006-07-07
Start date
2006-07-17
Completion date
Unknown
Last updated
2024-06-18

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Huntington's disease

Interventions

None listed

Sponsors

Leids Universitair Medisch Centrum
Lead Sponsor

Eligibility

Age
2 Years to 99 Years

Inclusion criteria

Inclusion criteria: .Individuals with clinical features of HD with a confirmatory family history of HD or with DNA testing results demonstrating the presence of the HD mutation (i.e. a CAG repeat expansion within the HD gene >35 on larger allele) •Individuals without clinical features of HD with DNA testing result demonstrating presence of the HD mutation (i.e. CAG repeat expansion within the HD gene >35 on larger allele) •First-degree relatives (i.e. parents, siblings, or children) of individuals with HD •Second-degree relatives (i.e. grandparents and grandchildren) of participating individuals with HD •Family members of participating individuals from category 1 or 2 who are know not to carry the HD mutation (e.g., spouses)

Exclusion criteria

Exclusion criteria: • Subjects who are unable to understand the study protocol or unable to give informed consent, and have no legal representative. •Participants with choreic movement disorder other than HD.

Design outcomes

Primary

MeasureTime frame
There is no fixed end of study as 'Registry' will take place during visits at the out-patient clinic of the department of Neurology or nursing home. The study is imbedded in the network that provides a platform for communication and exchange of views on HD and a basis for research.

Secondary

MeasureTime frame
n.v.t.

Countries

Netherlands

Outcome results

None listed

Source: NL-OMON (via WHO ICTRP)