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About Us

The NMO Clinic and Research Laboratory at Mass General is the first home in New England for patients with NMO, MOG (Myelin oligodendrocyte glycoprotein) spectrum disorders, transverse myelitis and other rare autoimmune disorders of the central nervous system. Here, we specialize in these rare conditions – they are not an afterthought.

In our clinic, you can expect to see physicians who work at the vanguard of their fields. You might participate in a clinical trial. You could join us in increasing awareness about your particular disease. And you may find community with others who suffer from similar ailments.

Diseases We Treat

Research and Clinical Trials

Doctor and patient at desk
Collecting information for the CIRCLES biospecimen study.

The NMO Lab is actively involved in research to advance knowledge, improve care, unearth new treatments, and ultimately find cures for NMO and MOG spectrum disorders.

We conduct research and clinical studies in our state-of-the-art neuroimmunology laboratory in Charlestown, and participate with industry in clinical trials of new and repurposed drugs to treat these rare neuroimmunological disorders.

Current Research

  • New biomarkers of neuroimmunological disorders: Just as aquaporin-4 and MOG antibodies have transformed the field for patients with NMOSD, we are looking for new antibodies and specific immune cells that could identify patients with other autoimmune diseases of the nervous system
  • Genetic studies in familial transverse myelitis: We found the first genetic mutation in patients with familial transverse myelitis. We are actively recruiting more TM patients for testing and we have developed mouse models of these mutations to understand the role they play in this disease
  • Mouse models of NMO and MOG: Mouse models of NMO and MOG antibody disease are critical in our work to develop tolerization therapy. Tolerization therapy re-educates the immune system to stop attacking its own spinal cord and optic nerve. This therapy carries the promise of a durable cure that will not require long term immune-suppressive medications

Patient blood samples are critical for the success of this research. We are working with our own patients, the MGH BioBank, and the CIRCLES biorepository sponsored by the Guthy Jackson Research Foundation to ensure a robust supply of specimens for our varied research projects.

Active Clinical Trials

We are currently a site for two sponsored research studies in NMO:

  • Eculizumab in children (Alexion)
  • Ravulizumab in adults (Alexion)

Patients may know that in late June of 2019, the first drug for NMOSD was approved by the FDA. This drug, eculizumab, produced by Alexion, has the brand name Soliris. It was approved for adults suffering from NMOSD who are anti-aquaporin 4 (AQP4) antibody positive. Soliris is an intravenous medication that must be administered every two weeks for patients with NMO. The eculizumab trial in children could potentially expand the patient population to include AQP4-positive children. The second trial is for a variation of the medication that would allow for less frequent infusions – every 8 weeks instead of every 2 weeks.

We are pleased to be a site for the first-ever drug being considered for patients with MOG:

  • Rozanolixizumab in adults (UCB)

Based on the efficacy of IVIG (intravenous infusion of antibodies, or immunoglobulins, combined from thousands of donors into patients) in MOG antibody disease, rozanolixizumab is a weekly subcutaneously-administered medication that mimics the same mechanism as IVIG. It is being developed specifically for patients with MOG antibody disease.

Please ask your doctor if you can participate in any of the trials for which we are now recruiting patients.

We look forward to hosting additional trials in the future, and will announce the research as it becomes available to our patients.

Research Publications

Education and Outreach

Dr. Matiello speaks at Boston Patient Day 2019
Dr. Matiello speaks at Boston Patient Day 2019.

The NMO Clinic and Research Laboratory is a center for education about NMOSD and related disorders.

For professionals, we house fellowship programs, host medical residents and offer educational programming. We are working to raise awareness among physicians around the world about these often-unknown diseases.

For patients and the public at large, we are raising the profile of NMO and MOG spectrum disorders, increasing name recognition and promoting understanding about living with invisible chronic illness. The Clinic will provide its own educational programs and also partner with other institutions to offer learning opportunities for patients and their communities, including an annual “patient day”, sponsored by the Guthy Jackson Charitable Foundation and hosted by Brigham & Women’s Hospital.

Recent events include:

October 5, 2019: The NMO Clinic and Research Lab at Mass General cohosted a day with Neurology at Brigham & Women’s for NMOSD patients at a conference sponsored by the Guthy Jackson Foundation at Brigham & Women’s.  Experts from both hospitals shared updates in treatments and research, and answered patient questions during this day-long event that brought over 60 patients and caregivers from around New England.

October 4, 2019: The NMO Clinic and Research Lab hosted a CME course covering progress in the understanding of and research in Neuromyelitis optica. Over 40 professionals attended the program and dinner at the Liberty Hotel in Boston.

 

Other Patient Resources

Guthy Jackson Foundation

Guthy Jackson Foundation

Funding research on the pathophysiology and biochemistry of NMO

Sumaira Foundation for NMO

Sumaira Foundation for NMO

A nonprofit organization dedicated to generating global awareness of NMO

Siegel Rare Neuroimmune Association (SRNA)

Siegel Rare Neuroimmune Association (SRNA)

An international nonprofit supporting patients with rare neuroimmune diseases

National Organization for Rare Disorders

National Organization for Rare Disorders

A patient advocacy organization dedicated to individuals with rare diseases

Patients Like Me

Patients Like Me

A patient-led community where you can share your experiences and learn from others

The Assistance Fund

The Assistance Fund

Financial support for eligible patients including travel costs and copays

NeedyMeds

NeedyMeds

Connecting patients with programs offering help with healthcare costs

PAN Foundation

PAN Foundation

The Patient Access Network helps patients with out-of-pocket medical costs

RxAssist

RxAssist

Comprehensive directory of patient assistance programs

Alexion OneSource

Alexion OneSource

Patient support services for those on Alexion medications



Other Team Members

Gabriela Romanow Gabriela Romanow

  • Administrator for Community Relations (Mon - Weds)