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Dr. Stephen Goutman: Passionate Clinician Dedicated to Improving the Lives of People with ALS

Innovation plays a key role in The ALS Association’s fight to develop treatments and a cure for ALS and to empower people living with the disease to live their lives to the fullest. In this series of articles, we are celebrating some of the key innovations helping us change the nature of ALS forever.

We are joined today by Dr. Stephen Goutman, an associate professor of neurology at the University of Michigan and the director of Michigan Medicine’s ALS Center of Excellence and Multidisciplinary ALS Clinic. The clinic was recently awarded an ALS Association Clinical Management grant to support Dr. Goutman’s important study aimed at improving non-invasive ventilation for people with ALS through the use of custom-printed 3D masks.

Goutman is a neuromuscular-trained neurologist with clinical and research expertise in ALS. His major research interest is identifying environmental risk factors of ALS, with a particular focus on the State of Michigan.

Goutman received a career development award (K23) from the National Institute of Environmental Health Sciences (NIEHS) to pursue this work. Inspired by his patients, he leads a team of providers that strive to deliver comprehensive and compassionate care to persons with ALS and their families. This inspiration drives Dr. Goutman to not only identify new causes of ALS but also to develop improved therapeutic strategies.

Goutman partnered with Dr. Glenn Green, an associate professor of Otolaryngology-Head and Neck Surgery at University of Michigan, to determine if customizing a non-invasive mask interface using 3D printing technology could improve the use of non-invasive ventilation in a person with ALS.

After completing initial studies funded by the University of Michigan Institute for Clinical and Health Research, Goutman, Green, and colleagues received a Clinical Management Grant from The ALS Association to expand their studies (NCT03519880).

This is how the study works:

  • Patients seen at University of Michigan that cannot find a properly fitting commercial mask are identified and enrolled in the study.
  • A custom mask is designed from a 3D picture of a participant’s face using a special camera.
  • A customized mask interface is printed using medical grade silicone that follows the contours of each participant’s face.
  • Data is compared using the commercial versus the custom device to determine best outcomes.

This new technology could help reduce pain and skin breakdown, as well as uncomfortable and ineffective air leaks and make a measurable difference to someone living with ALS. The study team is working to rapidly enroll participants in this trial, and gain the preliminary data needed to determine if this therapeutic strategy proves effective. If so, they aim to design a multisite study to make this treatment strategy more widely available.

Dr. Goutman, what has the support from The ALS Association meant to you and how will your Clinical Management award push your project forward? 

We are so grateful to be entrusted by The ALS Association and its supporters to carry out this project. Non-invasive ventilation is the most effective treatment currently available for persons with ALS, increasing survival by over a year, while also improving quality of life. Yet, we experience hurdles in the delivery of this therapy that we are attempting to solve.

The Clinical Management Award is instrumental in funding the early development of this exciting study. Innovative ideas like this 3D printed mask cannot be acted upon without the tremendous support of the ALS Association. As this project matures over the next two years, we are hopeful that it creates opportunities to improve treatment for persons with ALS.

Why did you choose to join the ALS field?

After finishing medical school, I decided to specialize in neurology, because I had always been interested in neuroscience. From there, I have to credit my mentors for helping me find and follow my passion. I completed my residency and fellowship at Cleveland Clinic where I worked with Dr. David Polston and Dr. Erik Pioro.

I credit Dr. Pioro for teaching me about and creating a passion for studying and treating ALS. When I came to the University of Michigan, that mentorship connection was strengthened by Dr. Eva Feldman. Ultimately, I chose to focus on ALS because of the personal connection that goes into caring for and treating persons with ALS.

How did you come up with the idea for your 3D printed mask project?

I am working with Dr. Glenn Green, who is a pediatric otolaryngologist here at the University of Michigan. He has expertise in using 3D printing technology for a number of diseases, including complex airways and craniofacial abnormalities. I was at a Michigan Medicine scientific event and one of Dr. Green’s residents presented a poster about his 3D printing work with children.

Upon seeing the poster, I realized this could be a tremendous opportunity for our ALS patients. We receive complaints that masks used for non-invasive ventilation do not fit that well or are limited by air leaks. As a result of the air leaks, it becomes uncomfortable to use the machine. That’s really how this project came to fruition.

I am also so fortunate to be at the University of Michigan; it is such a collaborative institution and we’re able to bring on Dr. Albert Shih, a professor of Mechanical and Biomedical Engineering and his post-doc Dr. Jeffrey Plott to add invaluable expertise. Their lab is currently creating the masks for patients taking part in the study.

As a physician treating people with ALS, what inspires you?

I am inspired by persons living with ALS as well as their family members and caregivers. They experience this disease on a daily basis and know its challenges. Yet, they possess an incredible resilience and desire to give of themselves to help identify better treatments.

It is remarkable how willing and engaging persons with ALS are when it comes to participating in studies and research. They want to be part of the solution. I’m inspired by the hope that we can identify better treatments to improve quality of life, sustain life, and eventually to stop and reverse the disease.