Key Takeaways
Black patients tend to be diagnosed a year later than whites for Huntington’s disease
The delay could keep them from getting treatment and preparing for the ravages of the disorder
This delay also could keep Black patients from taking part in clinical trials
FRIDAY, July 12, 2024 (HealthDay News) -- Black patients with Huntington’s disease receive their diagnoses an average of one year later than white people with the incurable genetic disorder, a new study shows.
Early diagnosis is essential to help patients get proper care and prepare for the effects of the disease, lead researcher Dr. Adys Mendizabal , a UCLA Health assistant professor of neurology, said in a news release.
“The sooner people come into care, the more information they have and the more they can plan,” she said. “Ultimately, we cannot yet change … the progression of the disease but we can definitely change the quality of life that people and their families experience while having the disease.”
Huntington’s causes brain cells to slowly lose function and die, primarily in parts of the brain that regulate movement and memory.
People with the disorder have movement symptoms similar to Parkinson’s disease , such as uncontrolled jerking and twitching, trouble walking and swallowing, as well as slurred speech. They also suffer mood swings and problems with reasoning, remembering and learning.
About 41,000 Americans have the disease and 200,000 are at risk of inheriting it, researchers said in background notes. A child of a parent with Huntington’s disease has a 50/50 chance of inheriting the disorder.
For the study, researchers analyzed data on more than 4,700 Huntington’s disease patients.
They found that Black patients received a Huntington’s diagnosis an average 4.6 years after the first motor symptoms started, compared to 3.7 years for white patients.
The study also found diagnosis delays based on education and income.
Unemployed people were diagnosed 1.3 years later than those with full-time jobs, results show.
And people with a PhD were diagnosed 1.7 years later than those with a high school degree or GED, researchers found.
Researchers also discovered that people who first develop psychiatric symptoms of Huntington’s disease rather than motor symptoms tend to be diagnosed a year later.
Mendizabal said researchers cannot explain these differences, given the data with which they were working.
But delayed diagnoses could affect the underrepresentation of minority groups in clinical trials for treatment, she noted.
“We have a lot of clinical trials in Huntington’s that focus on disease modification, trying to prevent or slow down the onset of symptoms,” Mendizabal said. “But if you know that we have certain subgroups of patients that are experiencing delayed diagnoses or coming in with more severe disease, then they may not be eligible to be part of a clinical trial.”
There also needs to be better tracking of health outcomes of treatment among minority populations, she added.
“In addition to reviewing clinical data, we also need qualitative studies to appropriately understand the experience of minoritized groups with Huntington’s disease both as they navigate the disease, as well as accessing care for a rare disease within our healthcare systems,” Mendizabal said. “Our findings serve as a starting point to create awareness and improve access to care for minoritized groups affected by rare neurological diseases.”
The new study appears in the journal Neurology: Clinical Practice .
More information
The Cleveland Clinic has more on Huntington’s disease .
SOURCE: UCLA Health, news release, July 9, 2024
What This Means For You
Black people who have a parent with Huntington’s disease should be aware of their increased risk for the disorder, as well as the likelihood that their diagnosis could be delayed.
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