Ignite Creation Date:
2024-05-05 @ 11:31 AM
Last Modification Date:
2024-10-26 @ 9:09 AM
Study NCT ID:
NCT00075140
Status:
COMPLETED
Last Update Posted:
2009-01-16
First Post:
2004-01-02
Brief Title:
Family Health After Predictive Huntington Disease HD Testing
Sponsor:
National Institute of Nursing Research NINR
Organization:
National Institute of Nursing Research NINR
Study Overview
Official Title:
Family Health After Predictive Huntington Disease Testing
Status:
COMPLETED
Status Verified Date:
2009-01
Last Known Status:
None
Delayed Posting:
No
If Stopped, Why?:
Not Stopped
Has Expanded Access:
False
If Expanded Access, NCT#:
N/A
Has Expanded Access, NCT# Status:
N/A
Acronym:
None
Brief Summary:
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
Detailed Description:
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 relativesignificant 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
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
Study Oversight
Has Oversight DMC:
None
Is a FDA Regulated Drug?:
None
Is a FDA Regulated Device?:
None
Is an Unapproved Device?:
None
Is a PPSD?:
None
Is a US Export?:
None
Is an FDA AA801 Violation?:
None