Neurologist John Rinker, MD, first learned about NARCOMS as a fellow at Washington University School of Medicine in St. Louis. When he came to the University of Alabama at Birmingham as an Assistant Professor in 2007, Rinker joined the team of neurologists making up the university’s Division of Neuroimmunology and Multiple Sclerosis Center.
In that role, Rinker says he observed in clinic many MS patients with ataxia—a lack of voluntary coordination of muscle movements that is typically hard to treat with medications. Rinker noticed, however, that in the patients taking natalizumab, their ataxia improved. Known by its name brand Tysabri, natalizumab is a Disease Modifying Therapy (DMT) used to prevent symptoms and slow the worsening of disability in people who have relapsing forms of MS.
“Since ataxia is a notoriously difficult symptom to treat in MS, it seemed to me particularly important if one of our existing disease modifying drugs might alleviate this disabling symptom,” Rinker says. “Since the number of patients with moderate to severe ataxia who are also taking Tysabri is low in just about any given practice, NARCOMS provided a means to access a much larger group of patients with disabling ataxia to survey them about their response to Tysabri. I pitched it to the drug company folks, the makers of Tysabri, who funded the study via an investigator-initiated trial.”
In February 2012 the tremor survey was sent to 777 NARCOMS participants who met two conditions. First, they reported mild or greater tremor on the Fall 2010 NARCOMS update questionnaire. Second, they had been taking natalizumab for six months or more.
The Survey also included participants who were taking other disease modifying therapies as controls. Seventy-two percent of those surveyed responded (560). Each participant was asked to draw spirals on a page, one with each hand. Pens for drawing the spirals were supplied by NARCOMS for consistency. Neurologists specializing in tremor scored the drawings based on a 10-point scoring system (Bain and Findley, 1993). Participants also reported personal tremor history, family history of tremor, medications used to treat tremor, and demographic information.
The data from the study are still being finalized. The next step, Rinker says, “will be to look at whether patients who have been on Tysabri for at least six months perceive an improvement in the severity of theirataxia or tremor, compared to patients who are taking other disease modifying drugs.”
“There are currently no treatments targeted specifically at tremor symptoms in MS,” Rinker says. “Maybe Tysabri suppresses the immune system sufficiently to help with this particular symptom, and this study sets out to take a closer look.”