Building an ALS Center for Proactive, Tailored Care

Acclaimed neurologist, Jinsy A. Andrews, MD, has joined NYU Langone Health as director of the new Amyotrophic Lateral Sclerosis (ALS) Center and medical director of clinical trials in the Department of Neurology.

A global leader in the field of ALS with over 20 years as a clinical trialist, Dr. Andrews is widely regarded for her expertise in translating research discoveries into clinical practice. As the elected co-chair of the Network of Excellence for ALS and a member of its scientific advisory board, she has collaborated across the more than 150 member sites to advance multicenter clinical trials. Previously, she served as director of neuromuscular clinical trials for the Department of Neurology at Columbia University Irving Medical Center and associate professor of neurology at Columbia University’s Vagelos College of Physicians and Surgeons.

Here, Dr. Andrews discusses her approach to building a comprehensive ALS center that combines proactive, individualized care with cutting-edge research to advance new treatments.

Physician Focus: What drew you to NYU Langone and this leadership role?

Dr. Andrews: I was excited by the opportunity to bring together a multidisciplinary team that will deliver the integrated, seamless service that patients with ALS deserve. With the population density of New York City and the surrounding areas, and the growing need for specialized ALS care and timely diagnosis, we saw an opportunity to create an additional center to better serve the people in our region.

The launch of the ALS Center is a combined effort with pulmonology, Rusk Rehabilitation, and others. Our comprehensive center will build individualized care plans within a coordinated multidisciplinary model, because ALS is different from person to person.

Our center will integrate clinical practice, research, social work, genetic counseling, rehabilitation, and dedicated nursing support. Our goal is to deliver comprehensive care that improves both quality of life and survival, while advancing our research mission to develop experimental therapies that could lead to more effective treatments, and ultimately a cure for ALS.

Physician Focus: What are your top priorities as director of the ALS Center?

Dr. Andrews: One of my top priorities is to establish NYU Langone as a certified ALS clinical trial site, offering not just the standard of care but also access to experimental therapies through clinical trials and expanded access programs, enhancing individualized care.

Many clinical trials are looking for early-stage patients, but it’s common for people with ALS to experience a diagnostic delay, limiting their eligibility for clinical trials. That’s where expanded access programs come in—offering experimental therapies to patients outside of a clinical trial. In the U.S. in particular, expanded access programs are limited. I’m excited to offer that care pathway here.

Another priority is to establish systems across the health center for early diagnosis. Every patient who comes through our doors will be offered genetic testing to improve detection of genetic forms of ALS. Early detection will also help us better leverage new technologies to optimize symptom management, preserve independence, and potentially delay the use of assistive devices, thereby not just improving survival but quality of life.

We are also pursuing research across ALS and other neurodegenerative diseases—including multiple sclerosis, Alzheimer’s disease, and frontotemporal dementia—focusing on shared mechanisms like neuroinflammation.

Physician Focus: What is one of the biggest challenges in the field of ALS, and how will NYU Langone and your work aim to address it?

Dr. Andrews: The biggest challenge in ALS care is evaluating the individual. Symptoms can vary from person to person, which is why it’s important to have a proactive approach in delivering care. Among the newest technologies that can help us be more proactive is transcutaneous carbon dioxide (TcCO2), which helps us monitor respiratory function by tracking arterial CO2 levels.

The traditional method of monitoring breathing is measuring forced vital capacity. But TcCO2 measurement may allow us to detect respiratory insufficiency earlier and intervene before symptoms appear, which can preserve patients’ independence and potentially prolong survival. To access TcCO2 and other specialized testing, it’s critical to have a specialist who focuses on ALS pulmonary care, such as renowned ALS pulmonologist Philip J. Choi, MD, who is an important member of our multidisciplinary program.

Physician Focus: What is your current research focus, and how do you see it advancing ALS research?

Dr. Andrews: There’s no cure for ALS and part of the reason is because we don’t know what causes it in the majority of people. To gain new insights about the cause, we need large scale natural history studies to centralize the collection of multimodal data. Among my research pursuits, I serve as co-principal investigator of the nationwide Access for ALL in ALS Consortium, collaborating with leading institutions on one of the largest NIH-funded natural history and biomarker studies of ALS. As part of that work, I plan to establish natural history data collection for ALS at NYU Langone.

I also want to explore ways to improve early-phase clinical trial design in ALS with digital twins or virtual patient cohorts. One of the projects I’m championing is validating a novel predictive algorithm for digital twin technologies using real-world clinical data. By simulating placebo groups in small phase 1 clinical trials, the approach has the potential to reduce sample size requirements and speed collection of preliminary efficacy and safety data.