Image Source: NBC Right Now
July 12, 2024 Story by: Editor
FRIDAY, July 12, 2024 (HealthDay News) — Black patients with Huntington’s disease are diagnosed on average one year later than white patients with the same incurable genetic disorder, according to a new study.
Early diagnosis is crucial for providing proper care and helping patients prepare for the disease’s effects, explained lead researcher Dr. Adys Mendizabal, an assistant professor of neurology at UCLA Health, 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 disease causes brain cells to progressively lose function and die, primarily affecting areas of the brain that control movement and memory.
Individuals with the disorder exhibit movement symptoms similar to those of Parkinson’s disease, such as uncontrolled jerking and twitching, difficulty walking and swallowing, and slurred speech. Additionally, they experience mood swings and issues with reasoning, memory, and learning.
Approximately 41,000 Americans have Huntington’s disease, and 200,000 are at risk of inheriting it, according to the researchers. A child of a parent with Huntington’s disease has a 50% chance of inheriting the disorder.
The study analyzed data from over 4,700 Huntington’s disease patients. It found that Black patients received a diagnosis an average of 4.6 years after the onset of the first motor symptoms, compared to 3.7 years for white patients.
The research also highlighted diagnosis delays related to education and income. Unemployed individuals were diagnosed 1.3 years later than those with full-time jobs, and those with a PhD were diagnosed 1.7 years later than those with a high school degree or GED.
Additionally, the study discovered that patients who first develop psychiatric symptoms rather than motor symptoms tend to be diagnosed a year later.
Mendizabal noted that researchers cannot fully explain these differences based on the available data. However, delayed diagnoses could contribute to the underrepresentation of minority groups in clinical trials for treatment.
“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 is also a need for better tracking of health outcomes from treatments 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.” Source: US News
