Vigil Presents Poster On Impacts Of Misdiagnosis And Genetic Testing On Adult-Onset Leukoencephalopathy With Axonal Spheroids And Pigmented Glia Patient Journey At ACTRIMS 2024

Author: Benzinga Newsdesk | February 29, 2024 05:35pm

Poster highlights clinical overlap of ALSP and multiple sclerosis (MS) and details patients' barriers to genetic testing

WATERTOWN, Mass., Feb. 29, 2024 (GLOBE NEWSWIRE) --  Vigil Neuroscience, Inc. (NASDAQ:VIGL), a clinical-stage biotechnology company committed to harnessing the power of microglia for the treatment of neurodegenerative diseases, today presented a poster detailing the impact of misdiagnosis and the importance of genetic testing at the 2024 ACTRIMS Forum being held in West Palm Beach, Florida, from February 29 – March 2.

The poster outlines a systematic literature review of ALSP clinical features, results from a survey circulated to the ALSP community, and data gathered from a structured patient journey workshop which included perspectives on barriers to genetic testing and the impact of misdiagnosis.

"We continue to hear from members of the ALSP community that the path to an accurate diagnosis can be difficult, indirect, and time consuming. As with many rare diseases, the misdiagnosis of ALSP can be a significant and persistent challenge to overcome. Genetic testing allows those affected to not only understand their symptoms and disease, but to make informed decisions for themselves and their loved ones," said Ivana Magovčević-Liebisch, Ph.D., J.D., President and Chief Executive Officer of Vigil. "Our ongoing collaboration with the ALSP community has allowed us to make incredible strides in both our reach and research – leading to our no-cost genetic testing and counseling program ALSPAware and our clinical progress with iluzanebart. By understanding and documenting the unique aspects of the ALSP patient journey, we hope to provide answers, resources, and support to those impacted by ALSP."

This retrospective analysis revealed that only 24.7 percent of these patients received an accurate initial diagnosis of ALSP, and multiple sclerosis (MS) was one of the most common misdiagnoses. ALSP and MS are both neurodegenerative diseases that may initially present with similar motor and neuropsychiatric symptoms. However, the combination of white matter abnormalities, rapidly progressive behavioral, cognitive, or motor dysfunction symptoms, and/or family history of a neurodegenerative disease support the utility of genetic testing for ALSP.

Vigil's research revealed that the most prominent barriers to genetic testing include uncertainties around how to pursue testing, fear of results, potential financial impact, and challenges with managing care. It also showed that when considering genetic testing, access to approved treatments may be a motivator for patients, family members, and clinicians.

Methodology:

• A systematic literature review of ALSP clinical features was conducted with published case studies from 1980–2022.
• A structured patient journey workshop was hosted as a means of better understanding life with ALSP, including the impact of misdiagnosis and barriers to genetic testing.
• To further understand behaviors and attitudes towards genetic testing for ALSP, an online survey was circulated to the ALSP community, which yielded responses from healthcare providers and individuals with CSF1R mutations and/or family members of those with CSF1R mutations.
  
   

Poster Details:

Title: Clinical Overlap of Adult-Onset Leukoencephalopathy with Axonal Spheroids and Pigmented Glia (ALSP) and Multiple Sclerosis (MS) - Impact of Misdiagnosis and Genetic Testing on the ALSP Patient Journey

Date and Time: Thursday, February 29 at 6:00 pm ET

Poster Session: Poster Session 1

Poster Number: P126

The poster can be accessed on the Publications page on the Company's website.

Posted In: VIGL