• NIH Sep 30, 2002 | R01

    Prospective Huntington At Risk Observational Study

    Principal Investigator(s): Shoulson, Ira

    Institution: University of Rochester

    FOA Number: N/A

    Abstract

    This project will continue and expand the Prospective Huntington At Risk Observational Study (PHAROS). PHAROS is a collaborative effort involving 43 recruitment and evaluation centers in the US and Canada. Its goal is to recruit 1000 individuals who are at 50% risk to develop Huntington disease (HD). These are all individuals who have not undergone, nor do they plan to undergo genetic testing in which they will learn their test results. The three major goals of this research are to: define the earliest clinical precursors of HD; identify other genetic and environmental modifiers of HD onset; and collect information about beliefs and attitudes of participants who know they are at risk to develop HD, but choose not to undergo genetic testing.

    FUNDING AGENCY:

    Funder:
    NIH

    Institute:
    NATIONAL HUMAN GENOME RESEARCH INSTITUTE

    Funding Type:
    R01

    Project Number:
    R01HG002449

    Start Date:
    Sep 30, 2002

    End Date:
    Jun 30, 2007

    PROJECT TERMS:

    8-hydroxyguanosine, Address, Adenine, Adult, Age, Alcohols, Attitude, Award, base, Belief, Biological Markers, Blood, Blood specimen, Caffeine, Caring, Cessation of life, Characteristics, Chorea, Classification, Clinical, Clinical Trials, Code, Cognitive, cohort, Competence, Complex, Conduct Clinical Trials, confidentiality, Consent, Craniocerebral Trauma, Cytosine, Data, Deoxyguanosine, design, Detection, Diet, Digit structure, Disclosure, Disease, DNA, DNA Markers, Double-Blind Method, Dystonia, employment, Enrollment, Ethics, Evaluation, Event, falls, Future, Genes, Genetic, genetic discrimination, Genetic Research, Genetic Risk, genotype, Guanine, Health, Healthcare, Hereditary Disease, high risk, Hospitalization, Huntington Disease, Individual, information gathering, Injury, insight, Knowledge, knowledge of results, Learning, Leisure Activities, Length, Lethal Genes, Life, Longitudinal Studies, Measures, Motor, Motor Manifestations, Movement, mutant, Observational Study, oculomotor, Onset of illness, Other Genetics, Outcome, Participant, Pathogenesis, Persons, Physical activity, Ploidies, Population, Population Study, Predictive Value, Preventive, programs, prospective, Prospective Studies, psychosocial, Research, Research Personnel, Risk, RNA, Running, Safety, Sampling, Sensitivity and Specificity, Serum, Shapes, Site, Specific qualifier value, Specificity, Testing, Time, Tobacco, Trinucleotide Repeats, Uncertainty, Urine, willingness, Withdrawal

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