BioSEND banks biospecimens from studies related to Huntington Disease (HD) and other neurological and neuropsychiatric diseases.

Huntington Disease

BioSEND, with support from the National Institute of Neurological Disorders and Stroke (NINDS), banks biospecimens from two Huntington Disease (HD) studies, 2CARE and PREDICT-HD. Basic information about these studies and the samples available from each is provided below.

Available biospecimens for these two HD studies can be viewed through the online catalog at BioSEND. Investigators interested in obtaining specimens for research purposes can submit their request though the NINDS website.

Specimen Table

Cohort Population Genomic DNA RNA Plasma Serum CSF Whole Blood Urine
PREDICT-HD HD gene/CAG-expansion positive
2CARE HD Cases

Study Details

PREDICT-HD Study

The NINDS-supported PREDICT-HD study is a 32-site observational study of persons who have the gene expansion for Huntington Disease (HD), but do not have symptoms of disease warranting a diagnosis. The goals of the PREDICT-HD study involve laying the groundwork for the initiation of neuroprotective therapy in order to delay or conceivably prevent the onset of disease. The specific aims were designed to 1) improve prediction of disease diagnosis in healthy individuals using longitudinal measures of plasma, imaging, cognitive performances, motor ratings and psychiatric measures; 2) identify markers of disease progression prior to the clinical diagnosis and to characterize their natural history; and 3) improve the validity and reliability of disease measures upon which the power and sensitivity of multi-site trials and studies depend.

Study Subjects

Subjects completed annual study visits that included clinical assessment, MRI and biospecimen collection. Data can be requested through dbGaP.

Available Biospecimens

DNA and RNA from blood, plasma, whole blood, CSF, and urine

2CARE

2CARE is a 48 site, randomized, double-blind, placebo-controlled trial of coenzyme Q10 for the treatment of Huntington Disease (HD). The study enrolled 609 ambulatory subjects with HD who did not require skilled care or institutionalization. Eligible subjects were randomized to receive either CoQ 2400 mg/day or matching placebo. Subjects were followed prospectively and systematically for 60 months of double-blind observation. The primary outcome variable is a combination of time to death (for subjects who die) and the change from baseline to month 60 in Total Functional Capacity (TFC) score (for subjects who survive).

Detailed study information can be found here.

Study Subjects

609 individuals participated in the study. Eligible subjects were required to have clinical symptoms of HD and a confirmatory family history of HD OR a CAG repeat expansion ≥ 36. Data can be requested through dbGaP.

Catalog Coming Soon