Huntington Disease Clinical Trial
Official title:
Genetic Risk: Whether, When, and How to Tell Adolescents
This study is being conducted to learn more about family communication of genetic risk information. Semi-structured interviews lasting up to one hour will be conducted with three populations: parent/child pairs at risk for Huntington's Disease, parent/child pairs at risk for hereditary cancer, and genetic counselors.
The investigators currently lack an adequate understanding of how parents and children feel
about genetic risk/status, how it is communicated, and how it influences wellbeing and family
relationships. This understanding is vital in order for genetic counselors and other health
care professionals to provide the best guidance possible to families. However, little
research has been conducted on the impact of genetic risk information or testing on children
from the perspective of the child. The research proposed here is uniquely positioned to help
fill this gap.
For this study, the investigators will interview 15-20 parent/child pairs who are at risk for
Huntington's Disease (HD), 15-20 parent/child pairs who are at risk for hereditary cancer,
and 15-20 certified genetic counselors. Interviews will last no more than one hour and will
be conducted at a time and place that is convenient for the participant. The investigators
will offer participants a choice of conducting the interview in a private conference room at
the Berman Institute of Bioethics, or remotely by Skype or telephone. Parents and children
will be interviewed separately. Parents will be asked about the decision process behind how
and when they disclosed genetic information to their child, style of family communication,
advice for other parents in similar situations, and other questions related to the subject of
communication of genetic information to minors. Children will be asked about their experience
learning genetic risk information, style of family communication, how they felt, advice for
other kids in similar situations, and other questions related to the subject of communication
of genetic information to minors.
;
Status | Clinical Trial | Phase | |
---|---|---|---|
Terminated |
NCT03052712 -
Validation and Standardization of a Battery Evaluation of the Socio-emotional Functions in Various Neurological Pathologies
|
N/A | |
Not yet recruiting |
NCT04429230 -
Non-invasive Brain Stimulation in Huntington's Disease
|
N/A | |
Recruiting |
NCT05032196 -
Study of WVE-003 in Patients With Huntington's Disease
|
Phase 1/Phase 2 | |
Recruiting |
NCT03599076 -
Wearable Sensors for Quantitative Assessment of Motor Impairment in Huntington's Disease Huntington's Disease
|
||
Terminated |
NCT04617860 -
Open-label Extension Study to Evaluate the Safety and Tolerability of WVE-120102 in Patients With Huntington's Disease
|
Phase 1/Phase 2 | |
Completed |
NCT05748288 -
Development of the Virtual Unified Huntington's Disease Rating Scale
|
||
Not yet recruiting |
NCT05360082 -
Comparison Between [11C]UCB-J and [18F]SynVest-1 PET in HD.
|
||
Not yet recruiting |
NCT04370470 -
Development of Assessments for Later Stage HD
|
||
Recruiting |
NCT01834053 -
Safety and Efficacy of Bone Marrow Derived MNCs for Treatment of Cells for the Treatment of Hunting Tons Chorea.
|
Phase 1/Phase 2 | |
Completed |
NCT01357681 -
Effects of EGCG (Epigallocatechin Gallate) in Huntington's Disease (ETON-Study)
|
Phase 2 | |
Completed |
NCT01458470 -
A Trial of Memantine as Symptomatic Treatment for Early Huntington Disease
|
Phase 2 | |
Completed |
NCT00980694 -
Bioavailability of Ubiquinol in Huntington Disease
|
Phase 1 | |
Completed |
NCT00146211 -
TREND-HD - A Trial of Ethyl-EPA (Miraxion™) in Treating Mild to Moderate Huntington's Disease
|
Phase 3 | |
Recruiting |
NCT01412125 -
Study of Biomarkers That Predict the Evolution of Huntington's Disease
|
N/A | |
Completed |
NCT00075140 -
Family Health After Predictive Huntington Disease (HD) Testing
|
Phase 3 | |
Recruiting |
NCT04818060 -
Preparing for Prevention of Huntington's Disease (PREVENT-HD)
|
||
Active, not recruiting |
NCT04698551 -
NIPD on cffDNA for Triplet Repeat Diseases
|
||
Not yet recruiting |
NCT04301726 -
Efficacy of Deutetrabenazine to Control Symptoms of Dysphagia Associated With HD
|
Phase 1 | |
Recruiting |
NCT03296176 -
Metabolomic Study in Huntington's Disease (METABO-HD)
|
N/A | |
Recruiting |
NCT05243017 -
Safety and Efficacy of AMT-130 in European Adults With Early Manifest Huntington's Disease
|
Phase 1/Phase 2 |