HDClarity

HDClarity

About HDClarity

HDClarity is a longitudinal open-ended observational study. Participants attend two annual study visits; an annual screening visit followed by an annual sampling visit and may also attend a further optional sampling visit during the first year of enrollment. The annual visits are at regular intervals after the first annual screening visit (i.e. at 1, 2, 3 years and so on) ± 2 months. The study is open to Enroll-HD participants aged 18-75 years who have a known HD genetic status or are control participants. Juvenile HD participants age ≤ 11 years can also take part.

During the annual screening visit, clinical and phenotypic data will be obtained. Participants who meet the eligibility requirements are willing to continue in the study, will return for the annual sampling visit during which ≤20ml CSF and approximately 50ml blood will be collected.

The primary objective is to collect a high-quality CSF sample for longitudinal evaluation of biomarkers and pathways that will enable the development of novel treatments for HD. The secondary objective is to generate a high-quality plasma sample collection matching the CSF collections, which will also be used to evaluate biomarkers and pathways of relevance to HD research and development.

Clinical datasets

Available clinical datasets associated with this study are displayed below. These are made available free of charge. The data elements and assessments captured in the HDClarity study are also illustrated below.

Available via the Enroll-HD platform. Visit the Access page for more information.

Biosamples

Available biosamples associated with this study are displayed below, alongside aliquot sizes and biosample prices. There is a 20% discount on biosamples for academic use. Shipping and handling fees are provided separately on request, and depend on shipping type and distance.

Participant biosamples are not sold for profit. Biosample fees (i) are applied to partially offset the costs of collecting and storing the requested biosamples, and (ii) give people requesting biosamples a sense of the actual “cost” of their experiments.

Available via the Enroll-HD platform. Visit the Access page for more information.

Data from biosamples

Available biosample datasets (e.g., methylation data) associated with biosamples collected from this study are displayed below.

Available via the Enroll-HD platform. Visit the Access page for more information.

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HDClarity

Data elements and assessments

The data elements and assessments captured in the HDClarity study are displayed below. Entries are reflective of HDClarity protocol V4.1.

General

Medical

Motor

Function

Behavior

Cognition

Genotyping

Quality of life

Health economics

Family history

Biosample

Imaging

*Update respective prior to Enroll-HD visit

General

Medical

Motor

Function

Behavior

Cognition

Genotyping

Quality of life

Health economics

Family history

Biosample

Imaging

*Update respective prior to Enroll-HD visit