Tracking changes and causes of Fragile X-associated tremor/ataxia syndrome (FXTAS)

Mechanisms and biomarkers of disease progression in Fragile X-associated tremor/ataxia syndrome (FXTAS)

NIH-funded research University of Kansas Lawrence · NIH-11239018

Researchers will follow people who carry FMR1 premutations—some with FXTAS, some without, and healthy volunteers—over two years to find brain, movement, and molecular markers linked to disease changes.

Quick facts

Grant typeR01 grant
Study typeNIH-funded research
Funding institutionUniversity of Kansas Lawrence NIH-funded
Lab location1 site (Lawrence, United States)
Project IDNIH-11239018 on NIH RePORTER

What this research studies

If I join, the team will measure my movement (including hand actions, balance, and walking), take task-based brain MRI scans, and collect genetic and molecular samples. They plan to enroll people with FXTAS, premutation carriers without symptoms, and age- and sex-matched healthy adults and test everyone at two visits spaced 24 months apart. The goal is to identify quantitative biobehavioral markers that change with the disease and to link those changes to genetic and molecular risk factors. This work aims to create reliable ways to track progression that could be used in future treatment studies.

Who could benefit from this research

Good fit: Ideal participants are adults who carry FMR1 premutations (both those with FXTAS symptoms and those without) as well as age- and sex-matched healthy adults.

Not a fit: People without FMR1 premutations or those seeking immediate therapeutic benefit are unlikely to receive direct clinical benefit from participating.

Why it matters

Potential benefit: If successful, the project could produce measurable markers to track FXTAS progression and help speed development and testing of future treatments.

How similar studies have performed: Imaging and biomarker approaches have aided understanding of other neurodegenerative diseases, but quantitative progression markers specific to FXTAS are largely novel and not yet established.

Where this research is happening

Lawrence, United States

Researchers

About this research

  1. This is an active NIH-funded research project — typically early-stage science, not a clinical trial accepting patient enrollment.
  2. Some NIH-funded labs run parallel clinical studies or seek volunteers for related work. To check, contact the principal investigator or institution listed above.
  3. For full project details, budget, and progress reports, visit the official NIH RePORTER page below.
Conditions Alzheimer disease dementiaAlzheimer syndromeAlzheimer's Disease
Last reviewed 2026-06-13 by the Find a Trial editorial team. Information on this page is for educational purposes and is not medical advice. Always consult qualified healthcare professionals about clinical trial participation.