NEALS Meeting 2023

The 2023 Annual Northeast Amyotrophic Lateral Sclerosis Consortium® (NEALS) Meeting was held in Clearwater, FLA this October. We had a wonderful time where we heard about some of the exciting work going on in ALS and met up with colleagues from across the United States all of whom are focused on making progress in understanding and treating ALS. It was great to bring the team along including our student researcher Zach Farber and our neurology resident researcher Hannah Henderson.

Before the official start to the meeting, there are educational events that that take place, including the Clinical Learning Research Institute (CRLI). Dr. Heiman-Patterson is a member of the CRLI faculty and plans to hold a regional CRLI in the Philadelphia area this Spring.

The Outcome Training for clinical trials, including refresher sessions on the Healey Platform Trial, was also part of the pre-conference education and Kathleen Hatala, Sara Feldman and John Furey attended these sessions.

The topics throughout the meeting included General Sessions, Updates, Science Symposium: Gene Therapies of the Future and the Hot Topic: Advancements of Neurofilament as a Biomarker. A lot of great discussions! 

There was a fantastic session from the Global Research Ambassadors, "Real People, Real Impact," which was presented by people with ALS, pre-symptomatic carriers, and surviving caregivers. It was truly impactful!
Jean Swidler, End the Legacy, highlighted Dr. Heiman-Patterson as a difference-maker in her advocacy. 

We were privileged to present some of the work from the ALS Center of Hope highlighted in the posters below.

ALS Natural History Database Supports the

Common Plateaus in ALS

Using the large Natural History Database, we confirmed the finding that there are plateaus in ALS. Ten centers contributed to this database including the ALS Center of Hope and many of our PLWALS are included in the data. In 1021 PLWALS in whom we captured 3 or more clinic visits, 21.5% of PWALS plateau for 6 months while 10.8% plateau for a year and 6.5% for 18 months.

Healthcare Disparities in ALS

Using data from the Natural History Database, we examined healthcare disparities in ALS.  In this initial study there was no difference between Black PLWALS and White PLWALS in regards to the time to diagnosis or survival. However, the ALSFRS and FVC at diagnosis was significantly lower in Black PLWALS relative to White PLWALS and the average age of onset lower. Additionally fewer Black PLWALS received feeding tubes at the clinically recommended time and fewer were on Radicava.

Characterizing Patient Preferences, Satisfaction & Quality of Care Across Healthcare Models in ALS

This study demonstrated that people living with ALS and their caregivers prefer multidisciplinary care and seeing all of the professionals with each visit. Additionally we found that this care setting adheres most to the quality of care measures for ALS outlined by the Academy of Neurology.

Oxidative Enzyme Analysis on ALS Subtypes: Implications for Edaravone treatment, an interim analysis

Dr. Jeffrey Rosenfeld from Loma Linda University Health presented on our collaborative work from the Dr. Robert Sinnott Research Lab.

One thing is certain we always come back with new ideas and renewed enthusiasm.