NCT00539747|Completed
Making Sense of a Positive Genetic Test Result for Huntington Disease
Meaning Making Among Asymptomatic Individuals With a Positive Presymptomatic Genetic Test Result for Huntington Disease
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Meaning Making Among Asymptomatic Individuals With a Positive Presymptomatic Genetic Test Result for Huntington Disease
Sponsor study identifier
Secondary identifiers
observational
50
1 country
4
Study Start
October 1, 2007
Date type not reportedThis date has not been verified as actual or estimated.
Primary Completion
Not reported
Date not reportedStudy Completion
August 5, 2008
Date type not reportedThis date has not been verified as actual or estimated.
This exploratory study will examine ways in which individuals approach a positive genetic test for Huntington Disease (HD). HD is a neurodegenerative disorder that causes emotional, cognitive, and movement problems, and currently there is no way to prevent, stop or reverse the progression of the disease. It is passed down through a mutation in a normal gene, and each child of an HD parent has a 50-50 chance of inheriting the HD gene. The study is designed to explore how individuals adjust to their new genetic status and evaluate any perceived mental or emotional barriers to that adjustment. Currently, little is known about how individuals come to terms with a positive genetic test result for a condition that has no known cure or effective treatment. The results of this study may give health care providers and counselors more information about how to help patients who are at risk for developing HD make sense of their new genetic status. Candidates will be prescreened and referred to the study by clinics that specialize in genetic testing and counseling. Candidates must be 18 years old or older and must have received a positive genetic test result for HD at least one month prior to the study. They must also perceive themselves to be asymptomatic-that is, without existing HD symptoms. During the study, participants will be interviewed and asked a series of questions about their decision to pursue testing, their life since the testing, and the things that they have found helpful or unhelpful since receiving the test results. The interviews will be recorded and will last approximately 60 minutes. Participants also will receive a follow-up phone call within two to three days to ensure their general psychological well-being after the interview.
Registry-reported information. Elapsed time and enrollment totals alone do not measure study progress or recruitment pace.
August 5, 2008
Date type not reportedThis date has not been verified as actual or estimated.
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Dates and qualifiers reported by the registry. Estimated dates do not confirm that a milestone has occurred.
October 1, 2007
Date type not reportedThis date has not been verified as actual or estimated.
October 4, 2007
Actual (reported)October 5, 2007
Actual (reported)August 5, 2008
Date type not reportedThis date has not been verified as actual or estimated.
Johns Hopkins University
Baltimore, Maryland, 21205, United States
National Human Genome Research Institute (NHGRI), 9000 Rockville Pike
Bethesda, Maryland, 20892, United States
University of Pittsburgh
Pittsburgh, Pennsylvania, 15261, United States
Baylor College of Medicine
Houston, Texas, 77030, United States
Daaleman TP, Frey BB, Wallace D, Studenski SA. Spirituality Index of Well-Being Scale: development and testing of a new measure. J Fam Pract. 2002 Nov;51(11):952.
Decruyenaere M, Evers-Kiebooms G, Cloostermans T, Boogaerts A, Demyttenaere K, Dom R, Fryns JP. Psychological distress in the 5-year period after predictive testing for Huntington's disease. Eur J Hum Genet. 2003 Jan;11(1):30-8. doi: 10.1038/sj.ejhg.5200913.
First Submitted
October 4, 2007
First Posted
October 5, 2007
Study Start
October 1, 2007
Date type not reportedThis date has not been verified as actual or estimated.
Study Completion
August 5, 2008
Date type not reportedThis date has not been verified as actual or estimated.
Creatine Safety and Tolerability in Premanifest HD: PRECREST
Contact the study team to confirm eligibility.
Bowes DE, Tamlyn D, Butler LJ. Women living with ovarian cancer: dealing with an early death. Health Care Women Int. 2002 Feb;23(2):135-48. doi: 10.1080/073993302753429013.
Last Updated
July 2, 2017
Record last verified: 2008-08-05
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