Current Adult Research Studies
Last week, we shared some current and ongoing studies available for pediatric patients diagnosed with ADEM, AFM, MOGAD, NMOSD, ON, and TM. This week, we’re highlighting studies available to adults diagnosed with these disorders! As we’ve mentioned, research is important to advance our understanding of rare neuroimmune disorders and develop better treatments. Participating in research is a way to contribute to these efforts and make a difference for the whole community of people diagnosed with rare neuroimmune disorders. A Longitudinal Study of Neuromyelitis Optica and Transverse Myelitis This observational study led by Dr. Benjamin Greenberg at the University of Texas Southwestern & Children’s Medical Center seeks to determine the biological causes of inflammation in patients with Neuromyelitis Optica (NMO), Neuromyelitis Optica Spectrum Disorder (NMOSD), Transverse Myelitis (TM), and Optic Neuritis (ON). While patients will be treated according to decisions with their treating physician, this study will collect data and samples from patients prospectively to gain a better understanding of the disease. The study is seeking to understand why some patients respond to medications, while others do not; and what happens biologically, preceding relapses. Gathering these data and samples will allow researchers to identify new ways of diagnosing and treating these diseases. Data and samples will be shared with researchers around the world to support collaborative efforts to treat these conditions. Find more details and contact information here. Pathology of Idiopathic Transverse Myelitis Idiopathic transverse myelitis is rare, and spinal cord tissue demonstrating the pathology of idiopathic transverse myelitis is even rarer. The reason we want to see the pathology of idiopathic transverse myelitis is because we need to know what is happening in the spinal cord at the time of an attack. We can stain for many different types of immune cells that may be involved. We can also get a sense of the target of the immune response – astrocytes, myelin, neurons and other structures. Getting a biopsy of the spinal cord is not routinely done to make a diagnosis of idiopathic TM. However, some patients with unique cases may have undergone a biopsy to rule out a tumor or other process. If you had a biopsy done in the past, and were ultimately diagnosed with idiopathic TM, we would like your permission to access the biopsy material and study it. This study is led by Dr. Michael Levy at the Massachusetts General Hospital and Harvard Medical School in Boston, Massachusetts. Find more details and contact information here. Study to Investigate the Safety of the Transplantation of Human Glial Restricted Progenitor Cells Into Subjects With Transverse Myelitis The University of Texas Southwestern, Q Therapeutics, Inc., and The Siegel Rare Neuroimmune Association are collaboratively sponsoring the first human safety study to treat central nervous system (CNS) disease. Participant criteria includes: Find more details and contact information here. CORE TM: Comprehensive Outcomes Registry Exploring Transverse Myelitis The Comprehensive Outcomes Registry Exploring Transverse Myelitis (CORE TM) study aims to compile information from individuals with transverse myelitis and acute flaccid myelitis to produce the largest study of outcomes in transverse myelitis to date. The study will combine a review of medical records and MRI scans from the diagnosis of TM with questionnaires completed by participants to determine the long-term impact of TM or AFM. The study is open to any child or adult with a diagnosis of TM or AFM, regardless of the onset of symptoms. Individuals who enroll in CORE TM will be required to provide medical records and copies of MRI scans from the time of diagnosis with TM/AFM. In addition, participants will complete online surveys covering various aspects of their physical and psychological well-being to determine the long-term impacts of TM or AFM. There are no face-to-face visits and no travel required to participate in the study. Find more details and contact information here. AFM Biorepository The Centers for Disease Control and Prevention (CDC) has funded a contract to create and manage the Acute Flaccid Myelitis (AFM) Biorepository. This biorepository will collect and store samples from people in the United States who may have AFM. Samples collected will include blood, stool, nasal/throat swab, and cerebrospinal fluid. The first samples will be taken in the hospital. They will be taken as close to the start of limb weakness as possible. A second blood sample will be taken 4-8 weeks later. These samples will be taken at the individual’s home or current location. Participant criteria includes: Find more details and contact information here. Cos-MOG Clinical Trial For MOGAD Treatment In our most recent Ask the Expert podcast, Dr. Michael Levy gave an overview of CosMOG, an ongoing clinical trial of rozanolixizumab for MOGAD treatment. He shared details about safety issues, the design of the trial, inclusion criteria, and where someone could learn more about the trial and participation.
