From the Editor
Sandy Siegel

Dr. Douglas A. Kerr’s establishment of the Johns Hopkins Transverse Myelitis Center was a critical and courageous event for the TM Community.  At the time Dr. Kerr initiated the Center, there was no one in the world who had declared a focus on caring for the TM patient population and performing research on all facets of this very complicated and rare neuroimmunologic disease.  What Dr. Kerr has accomplished in a very short time has totally transformed what the medical community knows about TM and what people with TM and their families understand about this disorder.  Dr. Kerr has been the singular force behind our major educational efforts, organizing and conducting the biennial symposia in Seattle and Baltimore.  Dr. Kerr has developed an amazing research program which includes all facets of Transverse Myelitis.  He has initiated a database of information, or a registry, to develop a better understanding of this disorder.  He collaborated with the leading researchers and clinicians in neuroimmunology to develop diagnostic criteria for idiopathic transverse myelitis.  Dr. Kerr studies the derangements in the immune system during a TM inflammatory attack in order to understand the disease process and to develop the most effective acute therapies.  He is involved in developing clinical trials to find ways to protect nerve tissue during an inflammatory attack.  Dr. Kerr is involved in stem cell research that offers the long-range hopes for restorative therapies.  He is also constantly involved in numerous research projects to find more effective treatment strategies for the symptoms of TM. 

He directly cares for more people with transverse myelitis than anyone in the world.  And he consults with physicians all around the world to facilitate and support the care of people who are unable to travel to Johns Hopkins for their medical care.  The Johns Hopkins TM Center and The Transverse Myelitis Association have shared a journey of a developing understanding of the needs of people with all of the neuroimmunologic disorders of the central nervous system.  As the TMA has become the advocate for people with TM, recurrent TM, Neuromyelitis Optica, Acute Disseminated Encephalomyelitis and Optic Neuritis, so has the JHTMC become a center that cares for people with all of these neuroimmunologic disorders.

Of course, Dr. Kerr does not perform all of these miraculous feats on his own.   Excellent clinical care and research are offered by the other physicians who are associated with the Johns Hopkins TM Center; Dr. Carlos Pardo, Dr. Adam Kaplin, Dr. David Irani and Dr. Benjamin Greenberg.  Chitra Krishnan manages and directs the JHTMC research program, plays a major role in coordinating the symposia and providing information to both the medical community and patient population, and she serves as the executive director of the Johns Hopkins Project RESTORE.  Project RESTORE was established as a collaborative effort with Dr. Peter Calabresi and the Johns Hopkins MS Center.  Finally, patient care is provided by Molly Kunkel, RN.  Molly has been spectacular in managing the care of more than 700 patients seen at the JHTMC.  Administrative services are provided by Mary Brown.  They are an amazing team!

I know what life would be like for a person with TM without Dr. Kerr and the Johns Hopkins TM Center.  Pauline got TM before Dr. Kerr established the TM Center and his specialization in TM.  He has changed our world in the most profound ways and we all benefit every single day from his work.  He embodies the hope that all of us have for ourselves and our loved ones; that they will have a future with restored function and an improved quality of life.

Dr. Kerr cannot do this work alone.  It is not possible for every person with TM and the other neuroimmunologic disorders to be personally cared for by Dr. Kerr and the other wonderful physicians at Johns Hopkins.  There is a great need to have physicians developing a better understanding of the neuroimmunologic disorders of the central nervous system and offering excellent medical care to our members across the United States and around the world.  It is also the case that the best research is done as a collaborative effort.  Through the collaborative process, research and clinical trials can be performed more effectively and can be greatly accelerated.  

It is also the case that there are many physicians who offer excellent care to people who have these neuroimmunologic disorders.  The physicians on our Medical Advisory Board offer exceptional care to both children and adults with these disorders.  In addition to this wonderful medical care, we are always grateful for their support of the Association: Drs. Gregory Barnes, James Bowen, Adam Kaplin, Doug Kerr, Chuck Levy, D. Joanne Lynn, Leslie Morrison, Frank Pidcock and Chitra Krishnan.  We also regularly refer people with these disorders to excellent medical centers across the country.  The physicians at these centers, such as Mayo Clinic, Cleveland Clinic, and Barrow Neurological Institute, are focused on these disorders; and many are regular participants in our symposia and have close ties to the TMA and to the Johns Hopkins TM Center. 

Having noted that there are physicians and medical centers caring for people with these disorders, and performing research, this activity does not currently benefit from a systematic and collaborative approach.  The medical professionals would greatly benefit from this approach and the people with these disorders would certainly benefit from this approach.

The TMA took some major steps in 2005 to develop this collaborative effort for research, clinical care and education.  This effort has the full and enthusiastic support of Dr. Kerr, the Johns Hopkins TM Center and Project RESTORE.

The Transverse Myelitis Association held its annual board meeting in July 2005 in Jim’s living room.  At the meeting, I presented a proposal to the board regarding the establishment of a Neuroimmunologic Disorders of the Central Nervous System Consortium (NDC).  The TMA Board voted unanimously to support this effort and endorsed this initiative as the primary focus of our research dollars.  In November, I had the opportunity to provide an overview of the NDC to the Board of Ambassadors of Johns Hopkins Project RESTORE. 

Soon after Shelley and Cody started the Cody Unser Firststep Foundation, they began to advocate for a consortium of medical centers to study TM.  Shelley and Cody have been early and fierce advocates for this form of collaboration, and they are fully supportive of the idea of establishing a registry and repository as the cornerstone of this research effort.  Shelley and Cody have reviewed the Consortium Proposal and are partners with the TMA in this important initiative.

Also in 2005 the National Institute of Neurological Disorders and Stroke (National Institutes of Health) held a workshop for advocacy organizations; The Transverse Myelitis Association received an invitation, and I attended this meeting with Dr. Kerr.  It was clear from the presentations that NIH is interested in funding registries and repositories and in collaborative efforts between medical research institutions and advocacy organizations.  While we are not counting on NIH funding to either initiate or develop the NDC, their encouragement reinforces the direction of our endeavor.  It was somewhat prophetic that one of the other advocacy attendees at this workshop was Art Mellor from the Accelerated Cure Project for MS. 

Art Mellor is the President of Accelerated Cure Project (ACP) for MS.  Art’s focus is on research and finding the causes of Multiple Sclerosis.  The cornerstone of Art’s research effort is the development of a registry and repository for MS.  He has devoted a tremendous amount of time, energy and resources into developing these tools, as well as initiating the process for constructing a collaboration of medical scientists and clinicians to carry out this effort.  Art began discussions with Dr. Benjamin Greenberg of the JHTMC to explore the involvement of Johns Hopkins in the ACP project. 

Through the relationship between the JHTMC, Project RESTORE and the TMA, a three-way conversation ensued between Dr. Greenberg, Art Mellor and the TMA.  The result of these important discussions has been the establishment of a partnership between the Accelerated Cure Project for MS, The Transverse Myelitis Association and Johns Hopkins Project RESTORE.  The registry and repository that Art had originally designed as a tool to study MS has become a tool for the study of neuroimmunologic disorders of the central nervous system, including MS, TM, recurrent TM, Neuromyelitis Optica, Acute Disseminated Encephalomyelitis and Optic Neuritis.  The collaboration of medical centers for the purpose of developing the registry and repository will become a part of the Neuroimmunologic Disorders of the Central Nervous System Consortium.  Art’s hard work, drive and determination have accelerated the process for curing MS, and have accelerated the development of the NDC.

Dr. Kerr has devoted a great deal of time, effort, and energy into establishing relationships between the leading researchers and clinicians from around the world in the neuroimmunologic disorders.  Review the program agendas from the Rare Neuroimmunologic Symposia, as well as the collaborators on the 2002 idiopathic TM diagnostic criteria project and publication, you will observe the foundation of the Neuroimmunologic Disorders of the Central Nervous System Consortium. 

Dr. Benjamin Greenberg will assume the lead role for Johns Hopkins in initiating the registry and repository, testing the various methods and procedures for collecting and storing this critically important information and tissue samples. 

I have asked Art to write an article for this newsletter describing the purpose, organization and development of the registry and repository.  I have also asked Dr. Greenberg to write an article describing his and Johns Hopkins’ role in initiating and testing the registry and repository.  Their articles directly follow this column. 

This is a threshold development for the TMA and for our community.  This incredible opportunity has occurred because of the collective good intentions of a group of people who share the same goals.  That we have come together at this time, in this way, on this project is a remarkable set of circumstances and events. 

The TMA is thrilled to be in this partnership with Johns Hopkins Project RESTORE, the Accelerated Cure Project for MS, and the Cody Unser Firststep Foundation to establish the Neuroimmunologic Disorders of the Central Nervous System Consortium.  We are looking forward to the more formal development of the medical center and physician participation in the NDC, as well as wider involvement of the other MS advocacy organizations. 

We are delighted to announce that the 2006 Rare Neuroimmunologic Disorders Symposium in Baltimore this July will represent the formal introduction of the NDC.  The scientists and clinicians who are being invited to participate in the science and clinical programs of the symposium will be introduced to the concept of the NDC.  Art Mellor from the Accelerated Cure Project for Multiple Sclerosis will be attending the symposium and will present information to the physicians and scientists about the development and progress of the registry and repository. 

The TMA has proposed that the Consortium be managed by an administrator who can dedicate his/her efforts exclusively to this work.  The TMA is interested in funding this position as soon as it is practical to do so.  We have no illusions about the time and effort that will be required to develop the NDC.  It is our hope that by bringing an administrator on board, it will be possible to more effectively focus our resources to begin this process.

I am including in this column the NDC Proposal that was presented to and endorsed by the TMA Board this summer.  The Consortium will not develop precisely as I have presented it in this proposal.  As with any collaboration, new and different ideas will improve upon these preliminary concepts.  The organization will be the result of a process, but the core of these ideas reflects the core goals of the organizations involved in this collaboration, and those will remain unchanged.  We all want for our members to receive the best possible medical care.  We want to understand what causes these disorders, and in so doing, find possible acute treatments and ultimately cures.  We want to encourage research to find the most effective treatments for the symptoms of these disorders.  We want to promote education for our members and educational opportunities to attract the best physicians and scientists into our discipline.  We want to promote and facilitate research and clinical trials in all of these neuroimmunologic disorders.

The NDC is a bold initiative and it could take years to develop into the comprehensive program that is enumerated in the following proposal.  How quickly it occurs will be primarily a function of the dollars we are able to raise to fund it.  Please read the proposal carefully, and think about how this process will benefit you and your loved ones.  I believe that the benefits are obvious, clear and urgent for all of us.  If you are looking for a way to make a difference for your community, I urge you to contribute to funding the NDC.  If you are seeking a way to improve your own life or the life of your loved one, I urge you to make a contribution to the NDC through The Transverse Myelitis Association.

A Proposal for the Neuroimmunologic Disorders of the Central Nervous System Consortium

Purpose: To establish and grow a multi-centered consortium focused on the neuroimmunologic disorders of the central nervous system. The Neuroimmunologic Disorder Consortium (NDC) will develop and maintain a registry and a repository from people with Transverse Myelitis (TM), Recurrent TM, Multiple Sclerosis (MS), Neuromyelitis Optica (NMO), Acute Disseminated Encephalomyelitis (ADEM) and Optic Neuritis (ON).  The NDC will offer clinical care to people with these disorders, based on best practices learned through consortium networking and information dissemination.  The NDC will participate in symposia and workshops on the neuroimmunologic disorders.  The NDC will facilitate and participate in basic research and clinical trials across all facets of the discipline.  The NDC will foster and promote educational opportunities for medical scientists who pursue research and for physicians who pursue a practice in the neuroimmunologic disorders of the central nervous system.

Rationale for Establishing the Neuroimmunologic Disorders of the Central Nervous System Consortium

Given that all of the neuroimmunologic disorders are rare, that there is no geographic concentration of people with these disorders and that no medical center attracts large numbers of people with all of the neuroimmunologic disorders, a multi-centered approach to the study and treatment of these disorders will greatly enhance our understanding of the disorders and their treatments.

There is presently little understanding of the incidence of TM among the population; there is absolutely no information about the incidence of NMO and ADEM.  There is a critical need to establish a better understanding of the incidence of these disorders among the population.  This effort will be made possible by the multi-centered approach and the collection of information about this disorder community.  By adopting the multi-centered approach to the study of these rare disorder communities, researchers will be able to achieve significantly larger sample sizes for their studies. The multi-centered approach will also facilitate the recruitment of control groups by including the entire spectrum of the disorders.

There is a critical need for the systematic and uniform collection of information from people who suffer from the various neuroimmunologic disorders of the central nervous system.  The development of a registry and repository which includes all of the neuroimmunologic disorders will begin the process of developing even the most rudimentary understanding of the pathology of these disorders.

By drawing on the expertise across medical centers with experience in research and clinical care for these disorders, the research on these disorders and the treatments based on best practices will be greatly enhanced and accelerated.

The NDC will include the study of the entire spectrum of neuroimmunologic disorders of the central nervous system.  Most studies to date have focused on these disorders in isolation perhaps limiting our understanding of the relationships between these disorders.  Much can be learned from the comparative analysis of these conditions.  By adopting this comparative and intensive approach to the study of these disorders, it is likely that more effective acute strategies will be developed to treat all of these disorders.  This approach is also likely to yield a basic understanding of the etiologies of these disorders.
There is no coordinated effort anywhere in the world that is focused on a comprehensive program to study and treat the neuroimmunologic disorders of the central nervous system.  There are no other organizations that are advocating for this approach.

A multi-centered NDC will accelerate the performance of and results from clinical trials focused on the neuroimmunologic disorders by increasing the potential recruitment of participants across a much wider geographic area.

Medical Centers and the Medical/Science Board

Medical centers will establish membership in the consortium with different levels of participation and representation.  Each of the members will have voting rights with weightings commensurate with various participation criteria (more weight for those centers who offer clinical care and enter information and tissue samples into the registry and repository).  The Medical Centers would form a subgroup in the consortium that would be focused on the medical and science activities of the consortium.  This medical/science board will appoint its members to various committees who will have the responsibilities for the medical/science activities of the consortium.  The Medical/Science Board will be responsible for:

• Developing and maintaining the periodic review process for the inclusive diagnostic criteria for each of the neuroimmunologic disorders included in the registry and repository;

• Developing the protocol used at the medical centers for the workup on the candidates for inclusion in the registry and repository, including the development of all of the information to be collected in the registry and all tissue samples to be collected for the repository and the regular and periodic review of this information and methods;

• Developing the criteria and procedures and then implementing and participating in the peer review, competitive proposal process for basic research to be based on registry information and/or repository samples and/or supported by financial grants from the NDC.

• Developing the criteria and procedures and then implementing and participating in the peer review, competitive proposal process for clinical trials to be administered by and/or supported by financial grants from the NDC.

• Developing the criteria for a competitive process for awarding fellowships to students interested in pursuing research in the neuroimmunologic-CNS discipline.  Serve on the committee to select candidates for these awards.  Develop and participate in a mentoring program at the medical centers who participate in this facet of NDC activity.

• Developing the criteria for a competitive process for awarding fellowships/residency to physicians interested in pursuing clinical practice and/or research in the neuroimmunologic-CNS discipline.  Serve on the committee to select candidates for these awards.  Develop and participate in a mentoring program at the medical centers who participate in this facet of NDC activity.

• Assisting in the planning, sponsorship and participation in the biennial Neuroimmunologic Disorders Symposium in Baltimore.

Medical Center Participatory Status

Full Participant Status
Some centers may engage in all consortium activities – they would be offering clinical care to patients with the neuroimmunologic disorders, they would be collecting and entering data in the registry and collecting tissue samples for the repository from their patient population, they would be submitting research proposals for basic research, they would be developing their own clinical trials and would be participants in clinical trials developed by other centers in the consortium, they would offer fellowships and residencies in the neuroimmunologic education program and they would participate in the symposia.  These centers would have full representation on the board (full voting rights) and would have certain privileges or rights based on their full participation, i.e., free access to the information in the registry without the requirement for the submission of a research proposal. 

Clinical Care and Clinical Trials Status
There may be other medical centers that do not participate in the full range of consortium activities, but are members of the consortium.  They might offer clinical care to patients, collect information and samples for the registry and repository and develop their own clinical trials and participate in consortium clinical trials.  They would have a slightly different status and representation on the consortium.  Any medical center entering information on patients into the registry would have access to the registry for the purpose of research at no cost to their institution and without the requirement for the submission of a research proposal. 

Basic Science/Research Status
There may be other medical centers involved that are only interested in the consortium for the participation in basic research.  They could also be members of the consortium, but would have the least representation.  As they would not be offering clinical care to patients, or adding information or samples to the registry and repository, they would be required to compensate the consortium for use of all data and information at a cost that adds significant value to sustaining and growing the consortium.  Their use of the data and information would be based on peer reviewed and competitive proposals.

Use of the Registry:  Any scientist may submit a research proposal to the Medical/Science Committee.  They would not be eligible for financial research grants from the NDC; only consortium medical centers would be eligible for the award of a grant, but they could be awarded access to information in the registry based on a peer reviewed and competitive submission of a proposal.  The costs associated with the use of the registry by non-consortium medical centers or scientists would be considered a revenue stream for the consortium, i.e., the costs of the collection and maintenance/overhead, and a significant additional cost for the purpose of growing the consortium.

Use of the Repository:  Based on the value and finite nature of this resource, the repository would operate by a different set of rules from the registry.   While the registry would be made available to medical centers and researchers from outside of the consortium and on a competitive, peer reviewed basis, the repository would not be made available to medical centers who are not members of the consortium.  All use of samples from the repository would be based on a peer reviewed and competitive submission of proposals.  There would also be a cost associated with use of samples, and the cost would be graded by medical center participant status in the consortium.  Full participants would pay a cost based on recovering the cost of collecting the samples, and some incremental administrative and overhead cost.  Those members of the consortium with Basic science/Research Status would pay a price that would be considered a revenue stream for the consortium, i.e., the costs of the collection and maintenance/overhead, and a significant additional cost for the purpose of growing the consortium.

Retrospective Study: The NDC can greatly increase the size, scope and significance of the registry and repository by performing a study of current TMA membership to determine diagnosis based on past medical records and NDC diagnostic criteria.  It is likely that there are significant numbers of people in our membership with a transverse myelitis diagnosis consistent with the criteria established by the TM Consortium Working Group in 2002. Our membership also includes people with NMO, ADEM and ON.  We also have members who had a TM diagnosis who then had subsequent episodes and received a MS diagnosis.  Getting these people entered into the registry could significantly advance the development of this information.  It would also be possible to request that this population submit tissue samples for the repository.  It would certainly be possible to get blood samples and, for many, MRI scans. 

Longitudinal Studies:  The NDC should give serious consideration to using the registry and repository to collect information on people with the neuroimmunologic disorders over time and to support longitudinal studies.  There is so little information on these disorders; there is almost no information on the long-term impacts of these disorders.  It is important that we are better able to respond to aging issues from our members with other than common sense and anecdotal information and models from the traumatic spinal cord injury population.  As the baby boomer population ages, there is a significant proportion of our membership that is moving towards these issues.  It is possible that we might be able to seek funding for some of these studies from gerontology resources – medical, social and behavioral sciences.

Research Grants:  The NDC would award research grants based on peer reviewed, competitive proposals submitted to a committee of the Medical/Science Board.  Only physicians and scientists from centers with consortium membership would be eligible for these NDC research grants.

Fellowships:  The NDC would award fellowships based on a competitive process across all of the medical centers in the consortium and submitted to and judged by a committee of the Medical/Science Board. 

Registry and Repository Design, Development and Administration

The medical/science board will design the content, structure, procedures and rules for the development and administration of the registry and repository. 

The Johns Hopkins Medical Center will be awarded a grant from the TMA for the purpose of hiring a NDC administrator.  The administrator will be responsible for the management and coordination of activities between the medical centers in the NDC, the non-medical organizations, and the committees, boards and executive board of the NDC.  The administrator will serve under the direction of the NDC Executive Board.  

Not for Profits/Advocacy Organizations and the Advocacy Organizations Board

Advocacy Organizations will be members of the NDC.  There would be a number of groups that could have interest in participation and membership in the NDC.  These organizations include: Accelerated Cure Project for MS, The Transverse Myelitis Association, The Cody Unser First Step Foundation, the Project Restore Board of Ambassadors, and a number of the MS organizations.  They will form a board of the NDC and will be responsible for:

• Raising money to support and grow the NDC;

• Promoting the NDC and raising awareness;

• Providing in-put to the medical advisory board on directions and priorities in research and clinical trials;

• Providing in-put to the medical advisory board on directions and priorities in clinical care;

• Collecting data and information and performing research in the patient population; i.e., collecting medical histories, demographics and psychosocial studies;

• Assisting in the planning, sponsorship and participation in the biennial Neuroimmunologic Disorders Symposium in Baltimore.

Executive Board of the Neuroimmunologic Disorders Consortium

The Executive Board of the NDC would be composed of a core group of founding members of the NDC.  Membership on the executive board would include a representative from each of the medical centers with full participant status.  The Johns Hopkins representative would be the Director of the Executive Board of the NDC.  A representative from each of the Advocacy Organizations would also serve on the Executive Board.  Both the Medical/Science Board and the Advocacy Organizations Board would serve under the direction of the Executive Board.

The Executive Board will begin the process of NDC development by establishing a detailed budget identifying the costs associated with the implementation and maintenance of the registry and repository.  The Executive Board will also begin the process of developing an organizational structure and by-laws for the operation of the NDC.  Assistance in this work will be requested from those medical centers and advocacy organizations that have an interest in becoming members of the NDC.

Additional Ideas about the NDC

Submission of Collaborative Proposals to the Centers for Disease Control and the National Institutes of Health
A collaborative submission of proposals to both the CDC and the NIH from the medical centers which make up the NDC would have a significant opportunity for funding.  As there is little to no good data on the incidence of TM, NMO and ADEM, a project which takes a collaborative, multi-centered, national approach to systematically collecting reliable demographic data might be of interest to the CDC. 

A meeting was held at the NINDS/NIH this past spring for not-for-profit advocacy organizations.  NIH indicated that they would be open to collaborating with not-for-profits as a funding source and they indicated that they would consider funding both registries and repositories. 

In 2003, NIH put out a request for proposals for multi-centered studies of rare diseases.  The Cody Unser Firststep Foundation, the TMA and the JHTMC have supported this approach as the most effective for studying these diseases.  NIH was seeking a way to fund rare disease research in the most cost-effective manner.  The way to do that was to include multiple centers and to perform data gathering and studies across a spectrum of related diseases.  That has been the model we have been interested in pursuing, and this is the model we are proposing now.  I believe that NIH will be very open to assisting our effort.

A significant part of the NDC administrator’s position will be grant and proposal writing to fund the registry, repository, and consortium activities. 

Revenue Streams for the NDC: Patents / Collaborations with pharmaceutical companies and Biotech Companies  The NDC should seek every opportunity to grow financial support for the consortium.  We will never be limited by good ideas or the list of critical work that needs to be accomplished.  All of what we want to do will only be limited by the ability to fund it.  The not-for-profits will likely be able to maintain the basic operation of the NDC.  I think the best case would be that the not-for-profits really get behind this effort and find ways to fund the registry, repository, provide funding for some basic research, and provide for the educational and training opportunities to attract the best and brightest to this discipline.  But the potential for significant funding may come from forging collaborations with companies engaged in research. 

We should, at every opportunity, exercise our influence to encourage long term commitments from every for profit company with whom we create a collaboration.  We are going to offer them the opportunity to create a product or service for the purpose of profit; in exchange, we are going to want them to make a long term financial commitment to sustaining and growing the NDC.   

In addition to company support, researchers should be encouraged to seek their own funding for their research from NDC registry information and samples and for clinical trials being implemented through the NDC.  And funding for some of these endeavors may be looked at more favorably if they are submitted as multi-centered studies or multi-centered clinical trials; the NDC should encourage these types of collaborations (the not-for-profits will encourage these collaborations).

If the biotech companies were seeking a study that required tissue samples from the neuroimmunologic community, we might consider doing the recruiting for volunteers, as opposed to providing them samples from our repository.  Companies or organizations outside of the NDC should not have access to the repository materials.   

Conducting recruitment for clinical trials could be accomplished in the same way.  The NDC could serve as a good resource for companies seeking to engage in clinical trials; the not-for-profits could help with the recruitment of people and the medical centers could conduct the clinical trials.  And as the NDC will be a national and international organization, many more people with the disorders would have access to many more centers which would greatly enhance participation and would accelerate these trials.

Clinical Care to People with the Rare Neuroimmunologic Disorders
“I can’t get a diagnosis.”
“I can’t find a doctor who understands anything about what is going on with me.”
“Do you know a specialist in TM or a medical center that knows about TM?”
“I’ve had these symptoms for a month and I haven’t been given any treatment at all, and my doctor says that there isn’t anything they can do for me.  He sent me home and told me to deal with it.”
“I have been in excruciating pain every single day and night for months and months and no one has any idea at all how to help me.  They have me on narcotics and they aren’t working.”

It will be a fundamental tenant of the medical centers participating in the NDC that they offer the best clinical care to people with TM, NMO, ADEM, MS and ON.  It is our hope that the NDC will become an international endeavor so that this clinical care may be extended to our membership around the world.  This care will be reflected in our research and clinical trials, and taking the results into the practice as quickly as possible (and then using experience from clinical care to drive research and clinical trials); and it will be reflected in medical center participation in symposia, thus helping people to become better and more effective advocates for their medical care by providing them with critical information.

Everyone around the world cannot get to Johns Hopkins for medical care.  Even in the middle of a demyelinating attack, getting everyone to Johns Hopkins is logistically and financially difficult or impossible for most people.  A more realistic approach is to have medical centers in a consortium and located across the country and around the world.  If we can refer people to a center either in their city or within driving distance, we are more likely to get them good medical care.  The patient benefits, and the NDC benefits by developing another experience with these disorders or another person entered into the registry and repository or another person recruited into a clinical trial.

Offering better clinical care to patients also involves better educating people with the neuroimmunologic disorders about when they need a neurologist’s care and when they do not.  And the consortium/medical community should initiate a process to determine and define a standard of care for people with the neuroimmunologic disorders. 

At present, there is no standard of care or set of guidelines for the medical community, and patients often do not receive clear or helpful communications from physicians.  When a neurologist tells a patient, “there is nothing more I can do for you,” it comes across to the patient as defeatist and demoralizing.  Unfortunately, this is not something communicated to people infrequently. 

If the neurologist said to the patient, “your condition has stabilized, your inflammatory attack has resolved, I have no suspicion that this is ever going to happen to you again and your symptoms could be managed by either a physiatrist or by an internist or general practitioner,” the patient would have a better understanding of the communication. 

There should be some standard of medical care established and disseminated in the medical community regarding how long a person should be monitored by a neurologist.  There are some people who need to be monitored on a long-term basis because they are at higher risk for a future inflammatory attack.  This would include people with MS or people who show evidence that might lead one to suspect MS, people with NMO and ON, people with a TM inflammatory attack that extended for three or more vertebrae in length, for people who had a TM attack with Systemic Lupus Erythematosus, Sarcoidosis, Sjogren's Syndrome or HIV/AIDS as the underlying conditions.  Some of these people would require coordinated care between a neurologist and rheumatologist. 

For those people with idiopathic TM or ADEM who appear to fit into the lower risk category for potential future inflammatory episodes, there should be the consideration of some standard for how long a person should be monitored by a neurologist.  Does the patient need to be monitored for a year, two or three, or a longer period of time?  The long-term care and treatment of symptoms can be done by a general practitioner, pediatrician and other specialists, depending on the nature of their symptoms (urologist, psychiatrist, physiatrist, orthopedic surgeon). 

Another important consideration would be to have a core of physicians in general practice associated with the consortium medical centers as a long term symptom management practice.  In this way, there would be a group of general practice physicians who gain experience in managing the wide variability of symptoms associated with these disorders, the erratic nature of exacerbations, and the processes involved in treating some of the more difficult symptoms, such as pain and spasticity.  Creating a strong relationship between physicians in general practice with the medical center consortium would also facilitate communications between general practice physicians and the neurologists specializing in the neuroimmunologic disorders.  There are going to be times when most people with these conditions will need to be referred back to a neurologist.  Having these physician relationships more formally established in the consortium would ensure that these referrals were done in a timely manner and that patient care was more effectively coordinated.

By adopting this approach, the neurologists at the medical centers could focus their attention on the people who need to be monitored by a neurologist on a regular basis or people who are having an onset demyelinating attack or a subsequent episode of demyelination.  And they could be assured that their patients are getting excellent follow-up medical care from physiatrists or internists/GPs or pediatricians who have experience and expertise with the neuroimmunologic disorders – and who also have a connection to the NDC through these referrals who also know that they have a resource available if they need to seek advice about a patient or think that the patient might benefit from being seen by a neurologist at the center (because something unusual is going on).  Coordinating medical care would be far easier to accomplish with these patients, if the neurologists referred to specific physiatrists, internists, pediatricians and GPs they knew were seeing other patients with these disorders.

Development of Diagnostic Criteria for ADEM  Am I incorrect, or is ADEM like the weird Uncle Harold of the neuroimmunologic disorders?  I regularly communicate with people who have the ADEM diagnosis, and when I ask them to describe to me the basis of their diagnosis – the tests used to arrive at their diagnosis, and the criteria used to rule in ADEM and rule out everything else – I get the most interesting confusion.  Invariably, the conclusion I hear from these folks is, I’m not at all sure how I got the diagnosis and I got the sense that my doctor wasn’t all that certain either.  Maybe the medical world knows exactly what ADEM is and how to diagnose it, and my impressions are from the perspective of an idiot sitting in his kitchen talking to patients on the telephone.  If so, never mind.  Do we have diagnostic criteria for ADEM as with TM and NMO and MS?  If so, great; if not, this would be a great opportunity for the NDC to work on these criteria.

Neuroimmunologic Symposia  With the development of the NDC, the symposia can take on more formal information sharing from the research and clinical trials that are being supported by the NDC.  The symposia can be a vehicle for sharing the research and clinical trials between centers and also promoting the research results to the wider medical community.  These meetings could also be a way of proposing new studies and clinical trials and offering networking opportunities between physicians and scientists for more collaborative efforts on these research proposals.  Instead of using the symposia as a ‘hopeful’ method for getting a group of scientists to glom onto a concept or proposal, the symposia can be an institutionalized vehicle for defining, promoting and recruiting collaborations between scientists and medical centers.  We could make this purpose one of the explicit reasons for bringing scientists together, and include presentations of work that is being proposed with the purpose of getting potential collaborators interested in joining forces on a study or helping to improve the study methods. 

In addition to the symposia presentations, the NDC might sponsor a publication which contains the results of NDC funded research or research based on the registry and repository.

The symposia would also be an opportunity for awareness and fund-raising for the NDC.  We should try to combine these efforts while we have the broadest participation from the neuroimmunologic community together in Baltimore – the scientists, clinicians and other medical professionals, students and educators, and the people with the disorders and their families.  The entire community benefits from increasing our resources and our opportunities.

The neuroimmunologic disorders symposia will remain focused on providing our members with information about current research and results on all aspects of the discipline from acute to long-term to restorative therapies, about current and proposed clinical trials, and about the most effective treatment strategies for their symptoms. 

The Transverse Myelitis Association will remain committed to providing educational opportunities to our members to help them to be the best advocates for their medical care.  The Neuroimmunologic Disorders of the Central Nervous System Consortium will help us achieve this and all of our other important organizational goals.