The ALS Association Upstate New York Chapter has awarded a three-year $300,000 grant to the ALS Certified Treatment Center at Upstate Medical University to support the center’s At-Home Telespirometry-based program for respiratory care for ALS patients. The innovative program uses a handheld spirometer and cellphone application to test and monitor a patient’s breathing function from home.

Monitoring pulmonary function in ALS patients is critical as respiratory failure from weak breathing muscles is a leading cause of death for these patients.

“The work of Upstate’s ALS Certified Treatment Center is vital to ensuring that patients with this devastating disease get immediate treatments at the first signs of a setback,” said Elizabeth Krisanda, Northeast territory executive for the ALS Association. “As the largest philanthropic funder of ALS research, the ALS association is pleased to support Upstate’s work on this important breakthrough.”

Eufrosina Young, MD, the medical director of Upstate’s ALS Certified Treatment Center, said her team is grateful for the ALS support. “Upstate and the ALS Association have had an enduring relationship that has helped Upstate with research on new treatments and opportunities to improve the quality of life for ALS patients,” Young said. “On behalf of our patients, I thank the association for its unyielding fight against ALS.”

Home monitoring a COVID reality

The idea to develop the home monitoring program came about shortly after the COVID pandemic hit when the medical team realized that virtual visits alone were not sufficient to manage this complex patient population.

Under Young’s leadership, Upstate purchased single patient-use, handheld turbine spirometers that used a cellphone application to test a patient’s pulmonary function capacity. Upstate respiratory therapists provided coaching online while patients performed the breathing tests from the safety of their homes. The real-time display of data was accessed through a clinical dashboard by providers at the center. Young says the implementation was made possible by the dedicated team from respiratory department, hospital administration led by Jennifer Carey, associate administrator and Anuradha Duleep, MD, medical director the University Health Care Center.

The technology allowed patients to test at a much greater frequency and efficiency, thus allowing for more timely treatment based on their breathing function.

The ALS Clinic at Upstate monitored 22 patients with at-home telespirometry in 2020. A year later, Upstate led a research collaboration with Atrium Health in North Carolina to refine methods that are mutually accurate and patient-friendly. Over the next two years, more than 120 patients have benefited from enhanced respiratory care with At-Home Telespirometry.

Young says the At-Home Telespirometry program is very promising in providing timely ventilation and nutrition. Her team is also undertaking further study to see if the program decreases hospitalizations.

Initial funding for the program was from the Upstate Foundation Tim Green Endowment to Defeat ALS Mitsubishi Tanabe Pharma America followed with support.

Young says the implementation was made possible by the dedicated team from respiratory department, hospital administration led by Jennifer Carey, associate administrator, and Anuradha Duleep, MD, medical director the University Health Care Center.

Upstate’s clinic has been part of the ALS Association’s network of Certified Treatment Centers of Excellence since 2005. The designation signifies that the center exhibits the highest levels of established national standards of care. It is one of only 72 in the country and the only certified center in the 48 counties served by the ALS Association’s Upstate New York Chapter.

ALS or amyotrophic lateral sclerosis, often referred to as "Lou Gehrig's disease," is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. There is currently no cure for the disease.

Caption: Elizabeth Krisanda, Northeast territory executive for the ALS Association, right, presents a $100,000 check to Eursofina Young, MD, medical director of Upstate’s ALS Certified Treatment Center, to support the center’s At-Home Telespirometry-based program for ALS patients. The presentation took place at the 2023 Walk to Defeat ALS, held Sept. 23 in Syracuse.