Prevent-HD Observational Study

Prevent-HD Observational Study This research study is looking at challenges in clinical trials for persons before Huntington’s disease (HD) diagnosis. You will undergo a brain scan.

PREVENT-HD (formerly known as PREDICT-HD) invites volunteers to participate in a research study to help develop and refine the tools that can be used in clinical trials to measure the effectiveness of treatment before the disease impacts daily life. We want to build a case for testing these treatments much earlier in people at risk for HD. Starting treatment sooner may help delay the start of symptoms or slow down the progression of the disease. We are currently enrolling adults from HD families. Criteria includes:
- People who have been gene tested for HD, who carry or do not carry the HD gene
- People who have recently been diagnosed with HD and are in the very early stages of the disease
- People who are gene-positive, but are not currently showing any symptoms (pre-symptomatic)

What will we do? You’ll complete cognitive, motor and quality of life tasks. You will donate blood and spinal fluid. We would like you to return 2 more times over the next 2 years, where you’ll complete the same tasks. How long will the study take? The study visit will take approximately 3-4 hours on day one and 2-3 hours on day two. You will donate spinal fluid and blood on day two after fasting overnight.

We had a great time seeing friendly faces and learning more about HD this weekend in Raleigh, NC at the HD Reach educati...
05/17/2022

We had a great time seeing friendly faces and learning more about HD this weekend in Raleigh, NC at the HD Reach education event!

And as you can see, we now have PREVENT-HD SWAG! Will we see you at the HDSA convention in three weeks?

There are lots of great in-person opportunities coming up for HD education & connection! The PREVENT-HD team will have a...
04/29/2022

There are lots of great in-person opportunities coming up for HD education & connection! The PREVENT-HD team will have a table at the upcoming HD Reach community event on May 15th in Raleigh, NC. We look forward to seeing many of you there.

The Hybrid Education Conference will offer new strategies to manage symptoms, plan for challenges and gain skills to make each day easier. We’ll have speaker sessions for everyone in the HD community, from those living with HD, those at-risk, HD caregivers, and youth. You won’t want to miss this...

If you weren't able to attend HDYO (Huntington's Disease Youth Organisation) International Congress earlier this month, ...
03/24/2022

If you weren't able to attend HDYO (Huntington's Disease Youth Organisation) International Congress earlier this month, you can watch all of the recordings on YouTube, including the PREVENT-HD session.

Dr. Jane Paulsen discusses the PREVENT-HD study that is happening at the University of Wisconsin, Maddison.

The PREVENT-HD team is excited to support and share about the study at this weekend's HDSA Wisconsin Chapter Annual Re-P...
02/14/2022

The PREVENT-HD team is excited to support and share about the study at this weekend's HDSA Wisconsin Chapter Annual Re-Prom event! If you live near Madison, WI join us for dinner and a great event raising money for Huntington's disease!

HDSA Wisconsin Re-Prom

Did you all see that the HDSA National Convention registration opens on February 1st?  It will be in-person in Atlanta a...
01/29/2022

Did you all see that the HDSA National Convention registration opens on February 1st?

It will be in-person in Atlanta and hybrid for those unable to make it. We look forward to brining our PREVENT-HD team to the conference to learn more from you and share more about our observational study!

Check out the HDSA Convention website here:

Huntington’s disease (HD) is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities usually during their prime working years and has no cure.

Sign up today for HDYO (Huntington's Disease Youth Organisation) 2022 Virtual Young Adult Congress taking place March 5 ...
01/17/2022

Sign up today for HDYO (Huntington's Disease Youth Organisation) 2022 Virtual Young Adult Congress taking place March 5 & 6th, 2022.

We are a proud sponsor of the event and our primary investigator, Dr. Jane Paulson, and the rest of the team will be presenting about the PREVENT-HD study and how you can consider getting involved.

As a delegate you are able to visit the virtual exhibition stands from our business units. In the stands you can chat with our experts, attend semi-live webinars and panel discussions, and download the latest product information.

Want to participate in the PREVENT-HD Observational study?  Reach out to our Clinical Study team using the link below to...
01/17/2022

Want to participate in the PREVENT-HD Observational study?

Reach out to our Clinical Study team using the link below to learn more and find our contact info! We look forward to hearing from you!

https://neurology.wisc.edu/prevent-hd/?fbclid=IwAR3IYv5HVZFjxUZv-hWbovQpSA8lgH-4Y0b7duiWo50IEgeMNXrgvVtUUcE

Our team built one of the largest studies to detect and track the earliest signs of Huntington Disease (HD). The study was called PREDICT-HD and was submitted to the NIH in 1999 by members of the Huntington Study Group. PREDICT-HD was funded by five investigator-initiated RO1 grants and sixteen coll...

Take a listen to the podcast that was recorded by our friends from Help 4 HD International while in Madison participatin...
01/05/2022

Take a listen to the podcast that was recorded by our friends from Help 4 HD International while in Madison participating in the PREVENT study a few months ago.

Thank you Lauren for participating and talking with us to share more about PREVENT-HD! Reach us to us if you'd like to learn more about participating in the study.

Help 4 HD Live! is the first international radio program ever created for the Huntington's disease community. Help 4 HD Live! was the first radio show created specifically for the Huntington’s disease community. With thousands of international listers, we continue to deliver credible education, i...

ClinicalTrials . gov is the go to place to learn about all the approved trials for Huntingtons disease.  Here is the lin...
01/05/2022

ClinicalTrials . gov is the go to place to learn about all the approved trials for Huntingtons disease. Here is the link specifically for the PREVENT-HD study.

Reach out to us with any questions and consider contacting our study coordinator to inquire about participation.

Preparing for Prevention of Huntington's Disease (PREVENT-HD) - Full Text View.

Learn more about PREVENT-HD by watching this webinar hosted by HDSA with Dr. Jane Paulson.Lots of great insights around ...
01/05/2022

Learn more about PREVENT-HD by watching this webinar hosted by HDSA with Dr. Jane Paulson.

Lots of great insights around why PREVENT and other observational studies are needed for the HD community!

PREVENT-HD is an observational trial being conducted at the University of Wisconsin School of Medicine and Public Health, which builds upon PREDICT-HD. Princ...

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Madison, WI
53792

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Monday 8am - 4:30pm
Tuesday 8am - 4:30pm
Wednesday 8am - 4:30pm
Thursday 8am - 4:30pm
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