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Black Patients with ALS Face Significant Diagnostic Delays, Large Study Confirms

Black Patients With ALS Article EUSM(1)

A new study found that Black patients with amyotrophic lateral sclerosis (ALS) experienced longer delays to being diagnosed with ALS than White patients. Societal determinants of health, such as disparities in access to care, may play a role, independent sources said.

Although they had a longer median survival, Black patients with amyotrophic lateral sclerosis (ALS) took nearly a year longer to receive a diagnosis and had lower baseline ventilatory and functional status at their first clinic visit compared with White patients, according to a new study published online December 28 in Neurology from investigators at Emory University School of Medicine.

The researchers reviewed 23 years of data (1997-2020) for patients seen at the Emory ALS Center; patients were included in the study if their race was self-reported as Black or White and symptom onset was before January 1, 2017 (to allow for adequate analysis of survival time). A total of 1,298 patients were included in the analysis, 203 of whom were Black, and 1,095 of whom were White.

Black patients were more than 2.5 years younger than White patients at the time of symptom onset), and experienced a delay of approximately eight months from symptom onset to diagnosis compared with White patients). Their baseline scores on the Revised Amyotrophic Lateral Sclerosis Functional Rating Scale (ALSFRS-R) were significantly lower, as was their baseline forced vital capacity (FVC) .

You can access the full article on Neurology Today.

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