Active Research
The HD Center at Penn works very hard to develop treatments and, eventually, a cure to Huntington's Disease by being part of clinical trials and research studies.
To learn more about the research studies being conducted at the HD Center at Penn, as well as information about opportunities and requirements for participation, scroll down:
(Click on the toggle to see enrollment status and point of contact!)
Enrollment Status: ENROLLING!
Contact for More Information:
Jennifer Klapper, MSN, RN, CNS-BC at 215-829-5176
Enrollment Status: ENROLLING!
Contact for More Information:
Jennifer Klapper, MSN, RN, CNS-BC at 215-829-5176
Enrollment Status: CLOSED
Contact for More Information:
Jennifer Klapper, MSN, RN, CNS-BC at 215-829-5176
Enrollment Status: Phase One completed, Phase Two pending.
Contact for More Information:
Jennifer Klapper, MSN, RN, CNS-BC at 215-829-5176
These are studies that are geared toward youth impacted by HD and are not affiliated with Penn's HD Center.
HDYO Survey Series
HDYO strives to support, educate and empower young people (18-35) impacted by Huntington’s disease. To accomplish this goal, HDYO has launched a series of surveys to better understand different aspects of our community’s lives as they continue their journey with HD. HDYO will continue to release surveys, so please check back in to find out more information. All surveys are IRB approved.
Survey 1: How the Community Seeks Support
Aim: The pandemic has changed the way people seek and access support. We want to better understand how our community is currently seeking support and resources. This will help us develop and improve our programs to serve young people globally.
Launch Date: April 1, 2023
Who Can Participate: Anyone who is impacted by HD at least 18 years and older. This is a global study - you can participate no matter where you live. This includes people directly affected (gene positive, at-risk, diagnosed with HD) and also those who love someone affected (gene negative, care partner, friend, professionals).
Data: Surveys are anonymous and no personal information will be collected or distributed.
Survey Link: https://monash.az1.qualtrics.com/jfe/form/SV_1FIqnOH0ssjlIai
JOIN-HD Registry
JOIN-HD is a global registry for families affected by Juvenile onset Huntington’s Disease. Open to people who have JoHD and their caregivers, all the information added to the registry will help increase understanding of JoHD. This will allow us to advocate for improvements to care, research, and awareness. We hope JOIN-HD will be a platform that will encourage other scientists and clinicians to carry out much-needed research into this devastating disease. These questionnaires are self-led in the comfort of their own homes.
Goals of JOIN-HD
- Build a global community of families impacted by JoHD.
- Increase knowledge of JoHD.
- Facilitate future research.
If you know of anyone who has been or is currently impacted by JoHD, they can complete our pre-registration to set up their preliminary interview. More information can be found at https://join-hd.org