Journal Volume 5 - January 2011
Article 12
The Johns Hopkins Transverse Myelitis Center: One Decade of Work and the Challenges for the Future Maureen Mealy, RN, BSN and Carlos A. Pardo, MD The beginning of the 21st century was marked by the establishment of the first center dedicated to the study and research of transverse myelitis (TM). The Johns Hopkins Transverse Myelitis Center (JHTMC) was established in 1999 through the efforts of Dr. Douglas Kerr. In collaboration with Drs. David Irani and Carlos Pardo, these clinicians and researchers created the foundation for a unique center dedicated to facilitate the diagnosis, treatment and research of transverse myelitis. This effort was enthusiastically supported by The Transverse Myelitis Association (TMA), its president, Sandy Siegel, as well as patients and members of the TMA from across the country and around the world. The tireless efforts of other members of the JHTMC, such as Chitra Krishnan and Drs. Adam Kaplin and Ben Greenberg resulted in significant strides being made in our understanding of TM and the initiation of novel research projects that resulted in more rapid and better diagnosis of TM and more effective treatments for TM. The team at the JHTMC has also been dedicated to providing education about TM to the patient community and to clinicians who care for people with TM. In 2010, more than a decade later, the JHTMC has experienced many changes, including the departure of some of the founding members and the new addition of others. During this period of change, we have taken the opportunity to refresh our focus and to rededicate ourselves to fulfilling our vision of a multi-disciplinary and comprehensive approach to patients with transverse myelitis to facilitate early diagnosis and treatment. Clinical Care at the Johns Hopkins TM Center We have focused on improving our ability to interact with patients and physicians by facilitating communication with the TM Center. With the support of Maureen Mealy, RN, BSN, Program Manager of the JHTMC, we have established easy access to patient referrals and have expedited the consultation process. By either contacting the JHTMC by phone (410-502-7099, option 2) or by e-mail (hopkinsTMcenter@jhmi.edu) patients and physicians may obtain information about TM, make appointments and arrange the coordination of services in a timely manner. We have established a system to facilitate a comprehensive assessment that involves not only the neurological evaluation, but other types of consultations in an effort to provide patients with long-term plans for management of all health problems associated with TM. These consultations may include specialists in rehabilitation, neuroradiology, neuropsychiatry, neuro-ophthalmology, urology, and spinal neurosurgery at Johns Hopkins Hospital and its affiliates at the Kennedy-Krieger Institute (KKI) International Center for Spinal Cord Injury. Our team at KKI possesses a focused interest in TM. A pre-visit assessment of needs and review of records allows us to better match each patient to specific doctors. We understand that so many of our patients are coming from across the country and from all over the world, and that their time and resources are valuable. Our assessment and review process has been put in place to provide patients with the best opportunity to get the absolute most out of their visit to the Center. This process also allows for patients with more urgent needs to be seen in a timely fashion. In fact, for some patients, their visit to the JHTMC may be in conjunction with a several week stay with the rehabilitation team either at Johns Hopkins or at Kennedy Krieger Institute for intensive therapy. Because of the complexities of transverse myelitis, the JHTMC consists of a team of neurologists within the Neuroimmunology Division, as well as other specialists who have a focused knowledge of this rare and oftentimes difficult disorder. Our neurological team includes: Dr. Carlos Pardo-Villamizar, Director of the JHTMC, focuses on acute idiopathic transverse myelitis, as well as sub-acute and chronic myelopathies associated with neurosarcoidosis and other etiologies. Dr. Michael Levy focuses on Neuromyelitis Optica and Neuromyelitis Optica spectrum disorders, including recurrent TM and longitudinally-extensive TM. Dr. Levy is the Director of the NMO Clinic at Hopkins, a clinic that is not only dedicated to the diagnosis and management of NMO, but also focuses its efforts on research into this TM-related disorder. Dr. Daniel Becker, a neurorehabilitation specialist and also faculty at the Kennedy Krieger Institute International Center for Spinal Cord Injury focuses on evaluation and treatment of long-term effects of TM and neurorehabilitation. Drs. John Ratchford and Daniel Harrison focus on myelitis, myelopathies, and demyelinating disorders that can present as TM. Both are neuroimmunologists with expertise in clinical trials and neuroimaging technology in neuroimmunologic disorders. Drs. Peter Calabresi (Director of the Johns Hopkins MS Center) and Scott Newsome focus on assessment of those patients suspected of having demyelinating syndromes that can present as TM. They are also interested in the assessment of novel technologies, such as ocular coherence tomography (OCT), a new non-invasive technique used in the assessment of axonal and retinal damage produced in neuroimmunologic disorders. Drs. Justin McArthur, Avindra Nath and Arun Venkatesan focus on patients with TM as a result of an infectious disorder. They have a longstanding interest in neuroinfectious disorders, including those that are associated with TM, such as herpes infections or other viruses. Dr. Julius Birnbaum has the unique expertise of rheumatology and neuroimmunology as he was trained in both specialties. He focuses on patients who have TM as a result of an underlying rheumatologic condition, such as Sjogren’s disease or systemic lupus erythematous. The Neuropsychiatry clinic for TM and MS was established through the pioneering work of Dr. Adam Kaplin. Dr. Kaplin’s work continues to be one of the most important facets of the JHTMC. Dr. Kaplin focuses on the assessment and treatment of issues related to depression and cognitive problems in patients affected by TM. Under the guidance of Dr. Daniel Becker and in partnership with the Kennedy Krieger Institute, we provide focused neuro-rehabilitation assessments, as well as physical and occupational therapy consultations, often times in the clinic while the patients are visiting with their neurologists. Dr. Glenda Bosques, a pediatric rehabilitation specialist, also contributes greatly to the assessment and management of children affected by TM at KKI. As TM presents as a multi-faceted neurological disorder, other non-neurology specialists are a critical part of clinical care at the JHTMC. Dr. Philippe Gailloud, an interventional neuroradiologist, provides a unique expertise on evaluation of patients suspected to have vascular abnormalities associated with the development of myelopathies and TM such as arteriovenous fistulas and vascular malformations. Dr. Izlam, a neuroradiologist, also provides expertise on imaging studies of TM and related disorders. Dr. Jean-Paul Wolinsky, a neurosurgeon at the Department of Neurosurgery and Spine Center at Hopkins provides important consultation expertise on issues related with spine disorders that mimic TM. Dr. Prem Subramanian, a neuro-ophthalmologist at the Wilmer Eye Institute of Johns Hopkins Hospital provides consultation and assessment of visual problems, such as optic neuritis that some patients with TM may experience. Dr. James Wright from the Department of Urology provides critical expertise regarding the assessment and treatment of bladder and urological problems often associated with TM. Under the leadership of Dr. Michael Levy and with the support of the Guthy-Jackson Charitable Foundation, we have established a sub-specialty clinic focused on Neuromyelitis Optica (NMO), a very challenging and rare subgroup of transverse myelitis characterized by recurrent longitudinally-extensive transverse myelitis and optic neuritis. Referrals to the Center are facilitated through The Transverse Myelitis Association and its president, Sandy Siegel, the JHH Hopkins Access Line (HAL, which facilitates inpatient admission to JHH from other hospitals), the JHTMC website, JH Access Services (which facilitates scheduling of outpatients to JHH), and the JH International Office. Additionally, there is an on-call neuroimmunologist to facilitate triage and admission, as well as to offer advice for the management of TM inpatients outside of the JHH system, in conjunction with the JHH HAL Attending. This allows for prompt attention to meet acute management needs. Research at the Johns Hopkins TM Center Research continues to be a major focus at the JHTMC. Studies for which we are presently recruiting include: Studies of the effect of TM on cognition and depression; and the role of factors, such as cytokines and other immune mediators have been the pioneering work of Dr. Adam Kaplin and his group. Dr. Kaplin was awarded the first NIH grant focused on TM and has continued his efforts to assess the role of other factors that influence the development of cognitive problems and depression in patients with TM. The Accelerated Cure Project (Johns Hopkins Principal Investigator is Dr. Arun Venkatesan) is a multi-center central blood repository and database which allows us to look into better diagnoses, therapies, and eventually cures for demyelinating disorders of the central nervous system -- transverse myelitis, neuromyelitis optica, acute disseminated encephalomyelitis, optic neuritis and multiple sclerosis. The repository and data are made available in a de-identified manner to researchers from around the world to help each of them with their individual efforts. These researchers then share back their data to the central repository so that we are continuing to learn more about these disorders every day. It requires a questionnaire and blood draw from participants. A study led by Dr. Neal Halsey at the Johns Hopkins Bloomberg School of Public Health in collaboration with the JHTMC focuses on an epidemiological analysis and assessment of risk factors leading to the development of acute idiopathic transverse myelitis, most specifically, the role that vaccines and acute infections may play in the development of this disorder. Participation entails the response to a questionnaire. A fourth study involves those patients with Neuromyelitis Optica (NMO). It will actually be a series of studies taking place over several years which build on previous results. This work is supported by the Guthy-Jackson Charitable Foundation and will be performed by a national NMO Consortium that has been created between Johns Hopkins, the University of Texas Southwestern, and Mayo Clinic. Currently, retrospective studies are underway to build the largest database of epidemiologic and demographic information of this patient population in an effort to gain insight to the causes of NMO, the appropriate diagnostic work-up, and the appropriate treatments for the disorder in a de-identified fashion. From this work, we will be generating new studies in the near future, the first of which will involve a comprehensive blood draw every three months at one of the three sites. Our hope is that information generated from this study will help us to gain more insights about the disease, how to predict recurrences and when and how to more effectively treat NMO. In the future, we will be recruiting for treatment studies, as well. Dr. Kathy Zackowski, PhD is an occupational therapist who possesses the unique expertise on evaluation of gait disorders. She and her group at the Kennedy Krieger Institute have focused research efforts on the assessment of outcome and gait disturbances that result from TM. Future studies on the effects of intervention treatments for TM and outcome measures, including gait, are being designed by Dr. Zackwoski’s group. JHTMC contact Information Phone: (410) 502-7099 (option 2) If you are a patient or the relative of a patient interested in consultations at the JHTMC, you may expedite scheduling of appointments by sending ALL of the following: MRIs (CDs or films), MRI reports, laboratory reports (blood and cerebrospinal fluid), and hospital admission/office notes to the above address or fax. If you are a physician or health provider interested in urgent referrals or consultations, please contact the phone or e-mail above or call the Hopkins Access Line and request to speak with the neurologist on call (800) 765-5447. It has been a very eventful year at the JHTMC and we are most grateful for all the support that has been provided to us by patients and families of our patients with TM and the enthusiastic support we receive from the TMA. As we move into 2011 we look forward to meeting the challenges before us and remain committed to offering the best clinical care to people with TM and to the critical research needed to better understand this difficult disorder and to develop better and more effective treatments. Maureen Mealy, RN, BSN Carlos A. Pardo, MD |