Change HD

Child to Adult Neurodevelopment in Gene Expanded Huntington's Disease To study brain development, we measure brain structure and function.

ChANGE HD is a brain imaging study with sites in Iowa City, Houston, New York, Philadelphia and Sacramento. Our research focuses on young people ages 6-30 who have a family history of Huntington’s Disease (HD). HD is considered an adult onset disease; however, research has shown that brain changes are evident before motor symptoms begin. In fact, the gene responsible for HD plays a role in brain d

evelopment and is present throughout the lifespan. With gene knockdown therapy showing promise for treatment of HD, it is essential to understand how removing or disabling the gene could impact brain development. To look at brain structure, we use a special research Magnetic Resonance Imaging (MRI) to take images that we can analyze to measure the size and shape of different parts of the brain. To get an idea of brain function, we administer assessments that measure attention, reasoning, memory, movement, coordination and balance. We also use questionnaires that ask about moods, relationships, hobbies and talents. A testing day takes about 6 to 8 hours, or about as long as a school or work day. Participants are compensated for their time and effort.

09/08/2025

Our team had a wonderful time at the symposium over the weekend in Ft. Lauderdale! Thanks to everyone who stopped by our table 💙

01/14/2025

*RESEARCH OPPORTUNITY*
Drs. Dawn Lammert and Heather Riordan are inviting caregivers of individuals diagnosed with pediatric- or juvenile-onset HD to participate in a study investigating HD and epilepsy!

The survey can be accessed through the QR code or link address at the bottom — link in bio!

11/05/2024

Come see us at the 2024 annual HSG Meeting in Cincinnati November 7th-9th!

06/02/2024

Our team had a wonderful time attending and speaking at the 39th annual HDSA convention in Spokane this weekend, meeting new families and seeing familiar faces! What a wonderful way to wrap up HD Awareness Month 💙💜💙💜

05/01/2024

May is Huntington’s Disease Awareness Month — please help us raise awareness and share information about HD!

02/28/2024

Tomorrow, February 29th, is Rare Disease Day! Please help us show support for the Huntington’s Disease community and help spread the word! Head over to for information about how you can show support for those living with rare diseases; they have many shareable resources available on both their Instagram and website!

10/26/2023

Congratulations to our ChANGE HD and JoHD Study imaging specialist, Eric Axelson — he is celebrating his 20th anniversary at the University of Iowa! Eric is instrumental in processing and analyzing our MRI data!

10/14/2023

We are thrilled to be attending the Help4HD symposium in San Diego this weekend! Stop by our table to learn more about ChANGE HD and The JoHD Study!

09/26/2023

The University of Iowa ChANGE HD team and the Nopoulos Lab was pleased to have Lucy Olson as student research intern over the summer! Congratulations to Lucy on her presentation on iron levels in children who are at risk for Huntington’s Disease! We wish her the best of luck on her second year of medical school!!!

09/08/2023

ChANGE-HD coordinator from the University of Iowa, Lauri Jennisch, travelled to the beautiful north woods of Wisconsin for Team Hope Walks in Eau Claire and Fitchburg/Madison in August. She enjoyed talking with attendees and volunteers alike about the study and about their experiences as a family member/friend/person with HD!

08/16/2023

Our Houston ChANGE HD coordinator, Brittany, and her little helper had so much fun at the HDSA Beat Heat bingo event the other week in Houston! Our team loves getting out to events and spending time with the HD community!

08/02/2023

Our Iowa team will be attending two walks in Wisconsin this month to share information about ChANGE HD and the JoHD Study! Stop by our table at the Team Hope Walk in Eau Claire on Saturday, August 19th or on in Fitchburg on Sunday, August 20th! Swipe for event details!

Address

Iowa City, IA
52242

Telephone

+18665140858

Website

http://www.changehd.org/

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Our Story

This is a brain imaging study for participants ages 6-30 and living at-risk for Huntington’s Disease. “At-risk” means having a parent or grandparent diagnosed with HD. Our study uses special tests to measure thinking and memory skills, general behavior, balance and coordination. We also use a brain scan called an MRI to take a picture of the brain. Participation takes about 6-8 hours.