Engaging Huntington disease patients in research

Written by Wendy Lombard

Huntington disease is a rare, debilitating illness that causes gradual deterioration of nerve cells in the brain over many years. It is an inherited disease that currently has no cure.

Symptoms usually don’t begin to appear until adulthood, typically between the ages of 30 and 50, though some children and young adults may also be affected.

Huntington disease leads to mood and personality changes, forgetfulness, poor judgement and involuntary movements known as chorea. It can also cause weight loss and make speaking, swallowing and walking difficult.

Research in people with Huntington disease is limited because it requires study participants to attend in-person sessions at clinics or labs, which can be challenging.

This is especially true for those whose illness is more advanced.

Thus, there is a need for new, less burdensome research study designs to better understand the day-to-day lived experiences of people with Huntington disease.

Addressing the need for more Huntington disease research

To address this need, Noelle E. Carlozzi, Ph.D., and her team conducted a study with 52 adults with Huntington disease living in the community.

The study tracked their daily symptoms and functioning, including chorea, sleep, fatigue, depression, anxiety, anger, physical activity, speech, swallowing and social engagement.

Over an eight-day period, participants wore a tracking device on their wrist to monitor sleep and physical activity, reported their symptoms three times each day using a mobile device app, and kept a nightly diary of their symptoms and functioning.

The study findings, published in Parkinsonism and Related Disorders, showed that people with Huntington disease could successfully complete the study tasks at rates similar to participants in studies of other diseases.

"We also found that symptoms and functioning varied more from day to day than within a single day, suggesting that once-daily assessments may be sufficient,” said Carlozzi.

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