An observational study in Huntington Disease, Hereditary Breast and Ovarian Cancer and Hereditary Cancer, sponsored by Johns Hopkins University. Completed at 1 site in United States. Open to participants aged 15 Years and older, including healthy volunteers. Per ClinicalTrials.gov, last updated 2019-02-07.
Sponsored by Johns Hopkins University · Observational
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Among 138 studies in Huntington Disease with a site in United States — 21 open to participants now, 29 under way, 4 of them phase 3. Huntington Disease · United States.
Among the 138 studies in Huntington Disease with a site in United States, this one is the 30th largest by enrollment of the 48 observational ones that give a count, is one of 7 that started in 2017, is one of 48 observational ones, and was the 79th registered.
293 studies on the registry are indexed under Huntington Disease; 54 are open to participants now.
Browse Huntington Disease studies →21 of the 138 studies in Huntington Disease with a site in United States are open now. Recruiting first, the newest first:
Prilenia · Sites in United States, Belgium, Canada and 9 more countries
Ages 23–65
Leslie Thompson · Sites in United States
Ages 18–65
Novartis Pharmaceuticals · Sites in United States, Argentina, Australia and 24 more countries
Ages 21–70
Skyhawk Therapeutics, Inc. · Sites in United States, Argentina, Brazil and 7 more countries
Ages 25+
The University of Texas Health Science Center at San Antonio · Sites in United States
Ages 18–85
A study can be open while its sites in United States have not opened yet or have stopped. Only those recruiting at a site in United States →
Of the 43 Huntington Disease studies recruiting now, 19 (44%) set no upper age limit and 20 (47%) stop at 75 or younger; 5 take children under 18; 20 take healthy volunteers.
This study: 15 Years and older · all sexes · healthy volunteers too.
The full table on the hub →This tab as a report to print or save as PDF → With an account.
138 studies; the count open now beside each. This study's row is marked.
A study in two phases is counted once above. Listed by phase, each with its combined phases: Phase 1 25 · Phase 2 39 · Phase 3 17 · Phase 4 3
First in 1999; this study’s year is marked. 7 started in 2017.
By drug class, each counting the studies that test any of its medicines:
This study's enrollment of 85 is close to the median of 90 across 82 observational studies indexed under Huntington Disease.
Median enrollment 44 across the 90 interventional studies, 131 across the 48 observational. Of the 99 that completed or were terminated, 36 (36%) have results posted.
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50 of 138 have an industry lead sponsor. The 10 most frequent:
Johns Hopkins University is the lead sponsor of 1,816 studies on the registry; 315 are open to participants now.
Of its 208 completed or terminated interventional studies of FDA-regulated products, 144 (69%) have results posted.
Johns Hopkins University has 4 studies filed under Huntington Disease — fewer than ten, so there is no comparison to draw.
9 of the studies in Huntington Disease with a site in United States that are under way reach primary completion within a year, 1 of them phase 3. Phase 3 first, then by date:
| Study | Primary completion |
|---|---|
| NCT04713982Phase 3Vanderbilt University Medical CenterImpact of Deutetrabenazine on Functional Speech and Gait Dynamics in Huntington Disease | 2027-06-30 |
| NCT06843252The University of Texas Health Science Center at San AntonioHome-based TDCS (Transcranial Direct Current Stimulation) for Cognitive and Behavioral Symptoms in Huntington's Disease | 2026-12 |
| NCT06475898Huntington Study GroupLongitudinal Endpoint Assessment of Disease Burden in HD | 2026-12 |
| NCT05326451The University of Texas Health Science Center, HoustonHome-based Transcranial Direct Current Stimulation Open Trial for Behavioral and Cognitive Symptoms in Huntington's Disease | 2026-12-31 |
| NCT03233646Duke UniversityRetinal Imaging in Neurodegenerative Disease | 2026-12-31 |
Add all 9 to your calendar (.ics) → With an account.
Among the 138 studies in Huntington Disease with a site in United States, from their registry updates:
This tab as a report to print or save as PDF → With an account.
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.
The study population will include individuals who reside in the USA, speak English, and are able to participate in one interview either in person, via phone, or via Skype.
Go through the criteria one by one — yes, no or not sure — and take the list to your doctor or the study team. Kept in this browser only.
Exclusion Criteria:
No interventions will be administered. Participation involves one semi-structured interview that will last up to one hour. The interview will be scheduled at a time and place that is convenient for the participant. The participant will be given the option to conduct the interview via phone, Skype, or in-person at Johns Hopkins.
No interventions will be administered. Participation involves one semi-structured interview that will last up to one hour. The interview will be scheduled at a time and place that is convenient for the participant. The participant will be given the option to conduct the interview via phone, Skype, or in-person at Johns Hopkins.
No interventions will be administered. Participation involves one semi-structured interview that will last up to one hour. The interview will be scheduled at a time and place that is convenient for the participant. The participant will be given the option to conduct the interview via phone, Skype, or in-person at Johns Hopkins.
Qualitative analysis of how parents and children with either Huntington's Disease or hereditary cancer communicate about genetic risk information
Qualitative interview performed at one occasion where the patient describes when and how genetic risk information was disclosed to minor as well as perspectives from both parent and child.
Time frame: 1.5 years
Plan to share: No
Ran from Sep 2017 to primary completion in Dec 2018, 15 months.
How these figures are worked out, and which studies are left out of them.
This study is completed, as verified in Feb 2019. You cannot join it, but the record below documents what was studied.
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