Researchers say they are close to a medical breakthrough for those with severe cases of multiple sclerosis, thanks to a two-year study that focused on residents at The Boston Home (TBH) on Dorchester Avenue.

Doctors with the University of Buffalo’s Neuroimaging Analysis Center (the Center) discussed their progress during a press conference at the Dorchester facility last Wednesday.

The study focused on patients with advanced MS symptoms, many of whom need wheelchairs or are bedridden. It’s a group that medical science hasn’t been able to specifically define, let alone give any hope of treatment. But the Center’s researchers say these early results have shown promise and prompted calls for additional study and collaboration.

“I think we did a lot of good work here,” said Dr. Robert Zivadinov. “This was really the second key project I’ve had for my Center. We’ve published more than 550 studies but very few studies are as important as this one with The Boston Home,” a 96-resident skilled care center specializing in care for those with severe forms of MS and one of a few in the country whose core mission is to care for MS patients.

Christine Reilly, chief executive officer at TBH, said its residents are engaged in all they do, including these studies. “Whether it’s participating in writing group, painting watercolors, or getting out to events in the neighborhood, our residents want to live life to the fullest, despite the challenges of advanced disabilities due to MS and other progressive neurological disorders.

“The CASA-MS study gives participants the chance to bring that same spirit to MS research. Our residents want to play a part in changing the future for people with progressive MS.”

In Phase 1A of the pilot study, dubbed CASA-MS (Comprehensive Assessment of Severely Affected MS), a group of 53 Boston Home residents with severe MS were paired with a control group of 53 residents in Buffalo with less severe MS. The two groups matched so evenly, but with different levels of MS severity, that they were nicknamed “study twins.”

MS is a degenerative disease that often breaks down the body’s ability to function over 30 or 40 years. While most patients don’t rapidly deteriorate – some never do – about 10 percent of those diagnosed progress to severe MS within 10 years. Using magnetic resonance imaging (MRI) and special tools newly developed for this study, the quest to find out why the disease progresses differently in different people broke new ground.

Most MS research using MRIs has focused on the white matter in the brain and the lesions that develop in those parts of the brain. Researchers on this work focused severe forms of MS and looked at parts of the brain never examined before – specifically grey matter, including the thalamus and hippocampus regions.

“Our hypothesis was that no matter how patients get to the severe progressive MS, they have a similar underlying condition which we believe is characterized by permanent damage in the grey matter that is driving the progression,” he said. “That has not been ever shown in this population.”

What they found at TBH was astounding, Zivadinov and his advisory council said. They didn’t find more lesions in the white part of the brain as traditional research expected, but they did find atrophy in the brain’s grey matter for those with severe progressive MS – a first-time discovery.

“What you see [on the brain scans] is there is a piece of brain missing,” he continued. “What this tells you is Boston Home people have more cortical atrophy – they lost tissue in the cortical part of the brain. That was a huge surprise to us, and we still cannot determine why this is. We believe it’s because of the cortical lesions that you cannot see on a normal MRI.”

The finding, people close to the study say, could re-write the definitions, approaches, understanding, and treatment of severe progressive MS.

“Those of us with MS have been telling researchers for a long time there’s something here you’re not looking at,” said Linda Safran, a Portland, OR, resident with less severe MS associated with the Center in Buffalo.

“There’s some other reason than why they thought some of us are progressing and others are not. They went out to find what the difference was between someone like me with MS and someone at the Boston Home with MS – and they found it. They actually found it.”

In addition to the breakthrough on MRI scans, the study also yielded special smartphone-based tools to measure cognition among those with severe MS – many of whom cannot talk and cannot use their hands. Those who participated in Phase 1A at TBH were not able to be interviewed for logistical reasons, and one participant declined an interview.

Advisory Council Chair Larry Montani introduced researchers to the Dorchester Avenue facility, and it was only by happenstance he knew of TBH. He had two siblings with severe MS who lived there in the past and later passed away. He urged that the Center study residents at the Home, and in 2019 they began making plans. Two years ago, the first phase was begun.

“Every city has resident homes, but there are only three cities in the United States that have resident homes for MS patients,” he said. “The reason clearly is that The Boston Home presented an opportunity to have a large group of people in one place with MS and with severe progressive MS who could be examined.”

A second phase of the study will begin soon with 24 TBH residents and 16 Buffalo residents, this time using a newly purchased portable MRI machine that will help to standardize the results and reduce the strain of examinations on TBH residents. This time they will be based in Dorchester, with researchers saying they learned that “we need to come here.”

In a proposed third phase they would study 30 TBH residents with early, severe progression, another 30 residents with late, severe progression, and then a control group of 30 in Buffalo with less severe MS.

“With this pile of data, we believe we will have everything in place to pursue government funding for a large NIH (National Institutes of Health) study,” Montani said. “It’s a very important data set; the first of its kind in the world.”

He also noted that the volunteers from TBH were very noble in sacrificing their well-being for the research – with examinations that are physically taxing to them and research many will likely not benefit from.

“The Boston Home residents are unbelievable,” he said. “Without them this would have not been possible. They certainly deserve all attention and gratitude.”

In one of the more heartbreaking aspects of the study, the “study twins” were approved to meet afterward. Many in the control group found it hard to cope with their “twin” being so debilitated despite being so similar.

That’s a sadness that Dr. Zivadinov hopes can be eliminated in the future using his studies – and the sacrifices of residents at TBH – to potentially develop therapies that reverse the progression of MS.
It’s a world those at The Boston Home have long dreamt of and now they can envision it with a glimmer of possibility.

“A part of this is to convince industries to develop drugs that can turn these people back to a previous stage of disability or no stage of disability,” he said. “Maybe turning them to fully healthy is something that is asking too much, but I’m pretty sure there are therapies out there to be studied that are better than what Boston Home people and people in this stage of MS are getting.”