HDYO has more information about HD available for young people, parents and professionals on our site:
What is the PREDICT-HD study?
The PREDICT-HD study is one of the most important research studies currently being undertaken in Huntington’s disease research. At the moment, people are typically diagnosed with Huntington’s disease once they show recognisable motor symptoms (such as involuntary movements), but doctors and Huntington’s disease family members believe that the disease starts to effect people way before they are officially diagnosed. The PREDICT-HD study was set up to find out just how much earlier in life Huntington’s disease effects people, and what impact that has on a person.
To do this, the PREDICT-HD study uses MRI scanners to take a picture of the brain of people who have either tested positive or negative for HD, to see what changes there are in the brain years before diagnosis of Huntington’s disease. Researchers in the study also look for changes in participants' thinking ability, mood, movement and how they get by in their day-to-day lives. The results of this study have been incredible, with the MRI scans showing HD having a clear impact on the brain many years before a person is actually diagnosed with having symptoms of the disease. And researchers have also found detectable changes before diagnosis in thinking ability, mood and movement when they look at everyone’s test scores and questionnaire results. Amazingly, research suggests that, despite this impact on the brain, people continue to perform at a very high level. But it is clear that the disease is having an impact in the background throughout these years. These results have led to huge steps forward in research for Huntington’s disease, and the PREDICT-HD study continues to produce vitally important information for researchers to help them target drugs and treatments for the future.
“We are very excited to learn about when and how brain changes occur before the beginning of symptoms in people who have the gene for HD. Volunteers have generously participated in our research, allowing us to make breakthrough discoveries. These discoveries will provide methods for tracking whether new treatments can slow down the disease process.” Elizabeth Aylward, Ph.D., Seattle Children’s Research Institute, PREDICT-HD Steering Committee Member
Who can participate in PREDICT-HD?
The PREDICT-HD study needs people who have tested positive for Huntington’s disease (meaning those that have been tested and found to have the gene expansion). Specifically, people who have tested positive but currently have not been diagnosed with any symptoms.
PREDICT-HD is looking for:
- People 18 years of age or older.
- Commitment of a companion (family member, friend, partner) to attend visits or complete surveys via mail.
- People who are able to undergo an MRI scan.
PREDICT-HD also has gene-negative participants involved, and will continue to have them in the study; however, they are not currently enrolling new gene-negative participants. Those participants who have tested negative are used as a control group, to compare and spot differences between the results of those tested negative and positive. If you are a gene-negative individual interested in participating, please contact PREDICT-HD, and they will get back to you when they are ready for new gene-negative enrollees.
FACT: Roughly one in every five participants in PREDICT-HD is gene negative for HD.
What is involved in a PREDICT-HD study visit?
Those who participate in the PREDICT-HD study do so on an annual basis. To give you a better idea of what is involved in a PREDICT-HD study visit, we sent HDYO’s very own guinea pig, BJ Viau, to go and experience the study for himself at the PREDICT-HD headquarters at the University of Iowa, USA.
Once a year, participants are asked to visit their study site and perform a series of tests. The tests performed in a PREDICT-HD study include:
Blood & urine samples: Blood and urine samples are analyzed to help learn more about the genetic aspect of the disease. The data can also be used in future studies to help further knowledge of the disease and search for potential treatments.
Thinking (cognitive) tasks: These involve doing a lot of tasks that seem more like games than tests. But they are in fact measuring different aspects of thinking, like attention, memory, and problem-solving.
MRI Scan: The MRI scan provides researchers with a detailed picture of the brain, indicating which parts of the brain change during the earliest stages of HD and how fast those changes take place. People are in the scanner for around 45-60 minutes.
Questionnaires: PREDICT-HD contains several questionnaires that ask participants how they are thinking, feeling and acting. These questionnaires help researchers understand what day to day life is like for participants and how it may be similar to or different from life for other participants.
Motor (movement) test: Participants are also asked to perform a series of movement tasks, which are very common for any Huntington’s disease research study. This exam includes things like: walking in a straight line, following movements with your eyes, and tapping your finger.
FACT: The average age of PREDICT-HD study participants is age 40, and they have participants ranging from 18 to 86 years old!
The study can take a total of up to 8 hours, which often means people must take off a day of work. However, travel expenses, meals and lodging costs are covered in PREDICT-HD.
A companion must also take part in the PREDICT-HD study visit by answering questions about the participant. These questionnaires are almost exactly the same as the questionnaires that participants fill out for themselves. The companion must attend the first PREDICT-HD visit and is encouraged to come with the participant to each yearly visit. If the companion is unable to make it to the yearly visits, though, a packet of the questionnaires can be sent home for them to fill out and send back to the visit coordinator.
Where are the PREDICT-HD study sites?
PREDICT-HD has locations around the globe in the United States, Canada, United Kingdom, Australia and Germany. See the list of study sites below to find the site nearest to you. If there’s not one close by, don’t worry! The PREDICT-HD team can cover necessary travel costs, including airfare. If you are interested in participating at any of the sites listed, click here to contact the PREDICT-HD team and they will help find the site that’s best for you.
- Columbia University Medical Center, New York, New York
- University of Rochester, Rochester, New York
- Johns Hopkins University, Baltimore, Maryland
- Cleveland Clinic Foundation, Cleveland, Ohio
- Emory University School of Medicine, Atlanta, Georgia
- Indiana University School of Medicine, Indianapolis, Indiana
- Washington University, St. Louis, Missouri
- University of Iowa Carver College of Medicine, Iowa City, Iowa
- Hereditary Neurological Disease Center, Wichita, Kansas
- Colorado Neurological Institute, Englewood, Colorado
- University of California-Los Angeles, California
- University of California-Davis, Sacramento, California
- University of California-San Francisco, San Francisco, California
- University of Washington, Seattle, Washington
- Centre for Addiction and Mental Health, University of Toronto, Markham, Ontario
- University of Alberta, Edmonton, Alberta
- University of British Columbia, Vancouver, British Columbia
- National Hospital for Neurology and Neurosurgery, London, United Kingdom
- Cambridge Centre for Brain Repair, Cambridge, United Kingdom
- Cardiff University, Cardiff, United Kingdom
- University of Manchester, Manchester, United Kingdom
- Clinical Genetics Centre, Aberdeen, Scotland
- Westmead Hospital, Sydney, Australia
- University of Melbourne, Melbourne, Australia
- St. George Health Service, Melbourne, Australia
- Graylands, Selby-Lemnos & Special Care Health Services, Perth, Australia
How to join PREDICT-HD? Who to Contact?
If you are interested in participating in PREDICT-HD or would like more information about the study, you can learn more at the PREDICT-HD website: http://www.predict-hd.net
Interested in participating?
You can use any of the methods below to contact the PREDICT-HD team, or fill out this easy to use webform.
200 Newton Road
Iowa City, IA 52242
PREDICT-HD has its own YouTube channel, too! You can watch videos from the PREDICT-HD team and learn more about the study at http://www.youtube.com/user/PREDICTHD.
HDYO would like to thank the PREDICT-HD team for helping us put this section together. We hope it has been helpful. If you have any questions, please ask either the PREDICT-HD team at firstname.lastname@example.org or contact HDYO - we are always happy to answer any questions you may have or direct you to those that can answer them.