What is the PREDICT-HD Huntington disease study?

What are the earliest detectable changes in thinking skills, emotions, brain structure and proteins/molecules as a person begins the transition from health to being diagnosed with Huntington disease? That is the question the PREDICT-HD study attempts to answer.

 

Funded by the National Institutes of Health and CHDI Foundation, Inc., Neurobiological Predictors of Huntington’s Disease (PREDICT-HD) is an observational study of healthy persons without any HD symptoms. Those who participate in the study have already tested for the HD gene mutation, and both presymptomatic gene-positive and gene-negative individuals have participated in the study. The multisite, annual data collection phase of the study has concluded. Our researchers are analyzing the data collected, as well as finishing up some work on ancillary studies related to PREDICT-HD.

 

Why study people at risk for HD before they show any symptoms?

 

Many HD families have reported that drug treatments to slow the progression of HD would be very meaningful for gene-positive individuals. For them, it is important to slow the disease when the individual can continue working, parenting and enjoying life in an active way.

 

PREDICT-HD researchers hope this study will help detect the earliest signs of HD, so that future HD drug trials can be targeted toward treatment that may slow the progression of the disease or prevent it altogether.

 

Results from PREDICT-HD and other studies have found people with HD show a decline in several areas before an actual HD diagnosis. Researchers are looking for early signs of HD demonstrated in thinking ability, motor skills, proteins and molecules, psychiatric symptoms, brain structure and brain function. Many articles have been published detailing findings from PREDICT-HD (find a list of articles here), and scientists will continue publishing findings as they become available.

 

Premium placed on privacy protection

 

PREDICT-HD has been designed to protect the confidentiality of its participants to the fullest extent possible. Participants have been assigned a coded number so names will not appear on study forms or on blood and DNA samples.

 

Assessment of HD symptoms used for research purposes only

 

Participants in PREDICT-HD are not told if they are developing signs of HD. If participants decide they do want to know if they are exhibiting symptoms, they will need to arrange for an evaluation outside of the PREDICT-HD study visit.

 

Are there risks associated with participating?

 

Uncertainties of not knowing when HD will start may cause distress for some individuals. Additionally, there are some minor risks associated with the spinal tap procedure and when blood is drawn. All risks are fully explained prior to participation.

 

Research findings aren’t possible without our participants

 

There is no direct health benefit gained from participating in PREDICT-HD. However, participation may help researchers understand the onset of HD in persons at risk for the illness, a crucial step in disease research.

 

From the investigators:

 

Jane Paulsen"In 1993, I sat with colleagues and HD families and talked about how the gene discovery had given us new hope. Dreams for drugs to treat HD seemed possible, yet our discussion emphasized how treatment should begin as early as possible, before jobs are lost and children's soccer games are missed. We talked about doing research with persons at risk before they become sick and struggled with how to best advance knowledge. PREDICT-HD is the result of much teamwork involving late hours and challenges too numerous to detail. It is a study we consider critical to make a difference in the quality of life for HD families." 
- Jane Paulsen, Ph.D., University of Iowa, PREDICT-HD Principal Investigator

 

Michael Hayden"PREDICT-HD represents a unique opportunity to study the natural history of HD, with particular focus on the earliest signs and symptoms. These data will be an important start to implementation of clinical trials for HD."
- Michael R. Hayden, Ph.D., University of British Columbia, original PREDICT-HD Steering Committee Member 


Elizabeth Aylward"We are very excited in learning when and how brain changes occur before the onset of symptoms in people who have the gene for HD. We are hopeful that measurements from MRI scans can be used as outcome measures in future clinical trials with presymptomatic individuals, where measurement of symptom improvement would not be possible."

-Elizabeth Aylward, Ph.D, Seattle Children's Research Institute, PREDICT-HD imaging consultant