| Official Study Title |
Unified Huntington's Disease Rating Scale (UHDRS) |
| Conditions Studied |
Huntington's disease (all stages of the disease) |
| Purpose |
The UHDRS is a standardized rating scale via which investigators
studying HD can obtain data to be stored the Huntington
Study Group (HSG) research registry. The HSG is an
international consotium of scientific investigators
who aim to advance the knowledge about the cause, pathogenesis
and clinical impact of HD and related disorders. |
| Inclusion Criteria |
Any persons at risk for developing HD due to family history, gene negative
individuals, asymptomatic gene carriers, and those with manifest HD may participate. |
| Exclusion Criteria |
Any person who, if unable to consent to research for
him/herself, does not have a surrogate, may not participate. |
| Testing |
An interview is conducted to obtain information on past medical history,
medications, specific questions about HD symptoms/diagnosis, behavioral and functional assessments as well
as cognitive testing. A neurologial exam is perfomred to assess motor skill levels. |
| Frequency of Visits |
Visits take approximately 2 hours, and are conducted at least
annually, and possibly more frequently depending on the rate of disease progression. |
| Materials Needed Prior to Evaluation |
Participants are recruited during their clinic visits. If they are
interested and eligible, they are then consented and their data for the UHDRS is acquired from their
clinical evaluation. |
