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Family Health After Predictive Huntington Disease (HD) Testing

This study has been completed.
Sponsor:
Information provided by:
National Institute of Nursing Research (NINR)
ClinicalTrials.gov Identifier:
NCT00075140
First received: January 2, 2004
Last updated: January 15, 2009
Last verified: January 2009

January 2, 2004
January 15, 2009
September 2001
October 2008   (final data collection date for primary outcome measure)
Impact of a positive HD test or presence of HD on a family members perceptions of: health problems, emotional and functional health status, resources/strategies for managing problems, helpfulness, and services needed to help family members cope. [ Time Frame: Over 6 yr span ] [ Designated as safety issue: No ]
Not Provided
Complete list of historical versions of study NCT00075140 on ClinicalTrials.gov Archive Site
Describe the health care needs, management strategies, and needs for health and social services of a broader sample of relatives/significant others in families in which a person has a gene mutation for HD. [ Time Frame: Over 6 yr span ] [ Designated as safety issue: No ]
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Family Health After Predictive Huntington Disease (HD) Testing
Family Health After Predictive Huntington Disease Testing

The purpose of this study is to identify health management concerns and needs of family members of asymptomatic and symptomatic persons with mutation in the gene for Huntington Disease (HD).

This is an observational study with three phases. In Phase 1, focus groups consisting of family members of persons with HD Gene mutation will be conducted and data collected to be analyzed through content analysis to identify salient themes and key issues. In Phase 2, a survey instrument will be developed and field-tested in order to describe the health care needs, management strategies, and needs for health and social services of relative/significant others of asymptomatic and symptomatic persons with the mutation in the gene for HD.

In Phase 3, the survey will be distributed to family members of asymptomatic and symptomatic persons with mutation in the gene for HD and frequencies and comparisons of survey responses according to respondent characteristics will be reported.

Observational
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Probability Sample

Family members or significant others, age 14 or older, of persons who 1) have received a positive result from predictive testing for a mutation in the HD gene, 2) are symptomatic and living at home, and 3) are symptomatic and are living in a long-term care institution were the population of interest for this study.

Huntington Disease
Genetic: Mutation in the gene
1
All Participants hav a family member with Huntington Disease
Intervention: Genetic: Mutation in the gene
Not Provided

*   Includes publications given by the data provider as well as publications identified by ClinicalTrials.gov Identifier (NCT Number) in Medline.
 
Completed
422
October 2008
October 2008   (final data collection date for primary outcome measure)
  • Family members of asymptomatic and symptomatic persons with mutation in the gene for Huntington Disease
Both
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No
Contact information is only displayed when the study is recruiting subjects
United States
 
NCT00075140
1-R01-NR007970-01
No
Janet K. Williams, PhD, RN, FAAN, University of Iowa
National Institute of Nursing Research (NINR)
Not Provided
Principal Investigator: Janet K Williams, PhD, RN, FAAN University of Iowa
National Institute of Nursing Research (NINR)
January 2009

ICMJE     Data element required by the International Committee of Medical Journal Editors and the World Health Organization ICTRP