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PREDICT-HD (PHD)

The PREVENT-HD study (formerly known as PREDICT-HD) was launched in 1999 by the Huntington Study Group with funding from the NIH. Now in its third decade, the PHD study is an ongoing multi-part (PREDICT-HD 1 and 2, PREVENT-HD)observational study of individuals who have the gene expansion for Huntington Disease (HD) but do not meet the symptomatic criteria for diagnosis. The goal of the PHD studies is to characterize the prodromal phase of HD to lay 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.
PHD

Study Participants

CLINICAL: motor, non-motor (cognitive, neurobehavioral, neuropsychological, autonomic, sleep)

IMAGING: structural and functional neuroimaging

BIOLOGIC: NfL, complement protein analysis, unbiased proteomics and metabolomics, and more

GENETIC: GWAS, transcriptomics

Request access to the PHD data through dbGaP

Available Biospecimens

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