Articles – Page 74

World Brain Day

By Mohammad Wasay, MD, FRCP, FAAN

Mohammad Wasay

There are many days related to neurological diseases being celebrated by professional organizations in collaboration with the World Health Organization (WHO), national organizations and local health ministries, including World Stroke Day, Epilepsy Day and Rabies Day. These days have proven to be extremely helpful in promoting public awareness and generating advocacy throughout the globe, including non-developed Asian and African countries. For example, the World Stroke Organization announced a global competition for public awareness and advocacy campaign focusing on World Stroke Day.

Brazil in 2012 and Sri Lanka a year later won the competition creating a huge impact at the national as well as regional levels. All of the days related to neurology are linked to neurological diseases. A few years ago, Vladimir Hachinski suggested celebrating a day for healthy brains. The human brain is so fascinating and is so closely linked to the health of whole human being that we should promote healthy brains. The future of this universe is linked to our brains so we should start a global campaign. The Public Awareness and Advocacy Committee came up with the slogan of “Our Brains-Our Future.”

The World Federation of Neurology was established on July 22. The committee proposed that July 22 should be recognized as “World Brain Day.” This proposal was announced at the Council of Delegates meeting in September at the WCN. The proposal was received with a warm welcome by delegates, Hachinsky, WFN president; Raad Shakir, WFN president- elect; Werner Hacke, WFN vice president; and other officials. The BOT meeting in February approved this proposal as an annual activity.

Our target audience is young brains throughout the world, and we want to promote healthy brain and brain health. Young students and minds are highly interested in knowing how the brain works and how we can make it work better. Brain health is a huge topic covering many areas, including understanding of brain function, optimization of brain function, disease prevention, mental health and treatment of brain disorders.

We should target to approach one billion people around the globe to educate about brain in 2014. Most activities will focus on World Brain Day, but it is a year-long campaign. National societies should plan activities focusing on young school and college students. With the help of social and electronic media, the information could go to millions of people. All societies should share their plans and activities, and those organizations with highest impact public awareness activities should be awarded. We should especially focus on Facebook and Twitter to connect with millions of people. Our young neurologists’ network on Facebook could be a great resource for this campaign. We should use multiple languages, especially focusing on Arabic, Chinese, French, German, Hindi and Spanish. We also could develop a five-minute promotional video with brief introduction of WFN in multiple languages. This video could be shared by millions through YouTube and Facebook. We have more than 100 member societies. If we are able to organize a few hundred programs on July 22 in all of those countries, it is bound to create an impact. Member societies could organize press conferences, media briefing sessions, lectures, seminars, conferences and poster competitions. Quiz competitions (Brain Quiz) have been successful and popular among school and college students.

Complexity of brain and neurological diseases often become a barrier for public awareness. “You should speak plain when you speak brain” was suggested by Keith Newton of the WFN. Our message should be simple and easily understandable for lay people. We could design a logo for this purpose, which may be a simple global message. WFN and local organizations could start a poster- or cartoon-designing competition to explain brain function and improve public awareness. Best posters, designs or cartoons could be awarded. We expect thousands of entries for this competition and some of these entries could become logos for our future campaigns.

There are many organizations working in this area, including the International Brain Council, International Brain Research Organization, the American Academy of Neurology, the International League Against Epilepsy and the World Stroke Organization. We should work with them for this common agenda. Strong liaison and lobbying with the WHO is important. If the WHO adopts this day in future, then this could be a great success for the WFN. If we are able to build a momentum around the globe in the coming years, we are sure it will become a WHO day in the future.

Wasay is chair of the Public Awareness and Advocacy Committee for the World Federation of Neurology.

JNS: Editor’s Update and Selected Articles

By John D. England, MD

John D. England

The Journal of the Neurological Sciences (JNS) and its publisher, Elsevier, are working together to improve the journal and to make the submission process easier for authors.

A major complaint from authors concerns the necessity to format manuscripts to fit the idiosyncratic requirements of journals. Since many high volume journals like JNS have a high rejection rate, authors frequently must reformat their manuscripts for submission to a different journal. This is not only a hassle, but a time-consuming process for authors.

In order to simplify the submission process for authors, JNS has eliminated strict requirements for reference formatting. As of now, we will accept manuscripts with no strict requirements for reference formatting. Any style of reference formatting will be accepted as long as the style is consistent.

If the manuscript is accepted for publication, then Elsevier will change the reference formatting to fit the style for JNS. As an extension of this process, in the near future JNS and Elsevier will begin accepting entire manuscripts without strict formatting or referencing requirements.

WFN_BreakingNews Elsevier already has introduced this feature, which is named “Your Paper Your Way (YPYW),” for several other journals in its portfolio. It has been so well received by authors that we will shortly begin offering this service to authors of manuscripts submitted to JNS. Taken together, these new options for manuscript formatting flexibility should make it easier for authors to submit manuscripts to JNS.

As noted in the previous issue of World Neurology, we have begun an “Editor’s Selection” of articles from JNS. Elsevier has agreed to allow free access to selected articles for members of the World Federation of Neurology. The process for viewing these articles is now streamlined: Click on one of the two featured articles on the World Neurology Online page, or use the “See all free JNS articles” link below the featured articles. It will take you directly to the free article page on the JNS website. In this issue, we share these two recent articles:

The Clinical and Pathological Phenotypes of Frontotemporal Dementia with C9ORF72 Mutations. Ying Liu and others from China have written a review on the phenotypes of frontotemporal dementia associated with C9ORF72 mutations. The expanded hexanucleotide repeat (GGGGCC) in the chromosome 9 open reading frame 72 (C9ORF72) is now recognized as one of the major causes of hereditary frontotemporal dementia (FTD). It is also the most frequent genetic cause of the ALS/FTD complex. However, the clinical and pathological phenotypes associated with C9ORF72 mutations appear increasingly diverse, and the mechanisms of disease are not known. See Liu Y, et al.

Journal of the Neurological Sciences 335 (2013) 26-35. An Association Between Benzodiazepine Use and Occurrence of Benign Brain Tumors. Tomor Harnod and others analyzed data from the National Health Insurance System of Taiwan to ascertain whether there is an association between long-term benzodiazepine use and the development of brain tumors. They identified 62,186 patients who had been prescribed benzodiazepines for at least two months between Jan. 1, 2000, and Dec. 31, 2009. These patients were compared with a matched non-benzodiazepine cohort of 62,050 patients. The incidence rate for benign brain tumors was 3.33 times higher in the benzodiazepine cohort compared to the non-benzodiazepine cohort with an adjusted hazard ratio (HR) of 3.15 (95% CI = 2.37-4.20). Additionally, the adjusted HRs for benign brain tumors increased with benzodiazepine dose. Thus, in this cohort study, the authors found a significant association of benign brain tumors with long-term benzodiazepine use. There are many possible explanations for such an association, and the authors correctly avoid the conclusion of causation. But, benzodiazepines are a commonly prescribed medication, and further studies of this important topic are warranted. See Harnod T, et al.

Journal of the Neurological Sciences 336 (2014) 8-12.

England is editor-in-chief of the Journal of the Neurological Sciences.

Palliative Care as a Human Right: Where Does the Neurologist Stand?

By Raymond Voltz

Raymond Voltz

Two recent international publications have put the spotlight on the situation of worldwide provision of palliative care. These are the “World Cancer Report,” published by the International Association of Research in Cancer (IARC) and the “Global Atlas of Palliative Care at the End of Life,” published by the WHO in collaboration with the World Wide Palliative Care Alliance. The “World Cancer Report” reminds us that the war on cancer has not been won and that still much remains to be done when treatment fails.

“The Global Atlas of Palliative Care at the End of Life” highlights the need for more palliative care: It estimates that 19.2 million people worldwide require palliative care with about 38 percent of patients dying from cardiovascular diseases, 34 percent of cancer and 10 percent of COPD. In the remainder, specific diseases such as multiple sclerosis (MS) and Parkinson’s are mentioned, and although less important on the global scale, patients with MMD/ALS. The atlas highlights the worldwide skewed distribution of palliative care services and access to palliative care depending on income and geographical regions worldwide. They conclude that palliative care is a human right, and that therefore each country should take improvement of palliative care up as a national strategy.

In some countries, it starts at the beginning: the access to opioids. A few weeks ago, a well-known Russian military committed suicide, stating in his final letter, that he did so because of an unbearable pain due to cancer and that he was not able to get opioids. Some countries are proud of their drug protection programs, which also means that they protect cancer patients from getting the right drugs at the right time. Here, a sensible political balance has to be reached. Opioids, of course, are important for the treatment of pain as well as the treatment of dyspnea. Provision of multiprofessional high-skilled palliative care follows those basic tenets.

So what does this mean for neurology? Cancer patients, cardiovascular patients and specific neurological diseases are treated within the responsibility of neurologists worldwide. As the atlas also states, their estimates only refer to patients at the end of their lives. The concept of early integration of palliative care has now fully reached the oncological world with the ASCO stating that all cancer patients should have access to palliative care. So, the need for palliative care is even greater than stated in the atlas, which the authors fully acknowledge. So where is the relevant interest in neurology? Do all neurologists worldwide know what palliative care structures already exist in their neighborhoods? Do they refer refer patients there early enough for common management of patients and families? Where is the topic of palliative care in the training of neurologists worldwide? Where are the neurologists who help establishing palliative care structures in their region? Where are the ones who advocate for a national palliative care strategy including all relevant patient groups? And finally, where is the interest of moving the field forward by valid research? Still, many neurologists think this in an unscientific topic not relevant to them, and that is a pity — mainly for many patients worldwide suffering not only from devastating neurological diseases but also from clear palliative care mismanagement by their neurologists.

Voltz is chair of the Department of Palliative Medicine at the University Hospital of Cologne, Germany.

International Conference on Freezing of Gait

Nir Giladi

By Mark Hallett, MD

Management of patients with Parkinson’s disease has progressed well. Levodopa and the dopamine agonists are effective, and when complications arise such as dyskinesias and fluctuations, deep brain stimulation (DBS) can be effective. However, another significant problem is now emerging. That is gait difficulties later in the course of Parkinson’s disease that are not responsive to either the dopaminergic therapy or DBS. Patients can look pretty good in many ways, but will have trouble relatively isolated to balance and gait.

One interesting feature of the gait difficulty is freezing of gait (FOG). With FOG, there is a failure to move forward despite intent to do so. FOG can occur at gait onset or in the middle of walking, particularly in some settings such as walking through a doorway or turning. At times, there can be off-freezing that is dopa responsive; the problematic situation is on-freezing. FOG also occurs in other Parkinsonian conditions such as progressive supranuclear palsy.

There have been two prior workshops devoted to the topic, but recently there was an international conference Feb. 5-7, organized by Professors Nir Giladi and Jeff Hausdorff at the Dead Sea. The conference was sponsored by TelAvivUniversity, the TelAvivMedicalCenter and the International Parkinson and Movement Disorder Society. More than 160 attendees came from 20 countries.

Jeff Hausdorff

Freezing also can occur with upper extremity movements or speech, but gait is more commonly affected and more debilitating. The topic is now under intense scrutiny. Gait is a complex movement requiring integrated activity of all parts of the brain and spinal cord with both balancing and stepping. This is likely why gait is more commonly affected than other movements.

There are a number of theories as to the etiology, and, as freezing is likely to be multifactorial, many of these may well be relevant in different patients. One type of problem is the deterioration of motor control capabilities, such as loss of the internal drive for movement, difficulties with multitasking and difficulties in carrying out automatic movements. Lack of gait symmetry is often correlated with freezing.

Another interesting motor control problem in Parkinson’s disease is the sequence effect, the progressive decline of movement amplitude in a sequence of what should be similar movements. Step length often gradually declines prior to a freeze, so this seems important at least in some circumstances. Cognitive problems, importantly loss of executive function, appear relevant. There is clearly a role of environment factors, including the path that needs to be traversed; the narrow doorway, for example.

There was considerable discussion of therapy. In the end, given the multiplicity of causes, therapy may have to be individualized. Certainly, there should be care to optimize dopaminergic therapy. Physical therapy can play a role. Much discussion focused on the value of DBS of the pedunculopontine nucleus (PPN). The PPN sits in a complex region at the junction of the midbrain and the pons and appears to be a part of, or at least close to, the mesencephalic locomotor region. The literature is really still sparse, and it is not clear that the DBS electrodes are actually in the PPN in all patients, but some patients do appear improved.

Gait freezing remains an important clinical phenomenon, a fascinating set of problems for physiology and a challenge for treatment. Giladi and Hausdorff have been leaders in all aspects, and the attendees were grateful to them for organizing a useful conference that will set the direction of research in the next few years.

Africa-Canada International Behavioral Neurology Videoconference Rounds

Morris Freedman, MD, FRCPC, Tim Patterson, BA, Riadh Gouider, MD, Sandra E. Black MD, FRCPC, FAAN, FAHA, Cindy J. Grief, MD, FRCPC, MSc, and Peter Whitehouse

In front of screen in Canada (left to right) Ayman Selim, Carmela Tartaglia, Sandra Black, Arnold Noyek, Cindy Grief, Morris Freedman, Tim Patterson. On the screen from Tunisia (foreground, left to right) Riadh Gouider, Mouna Ben Djebara and (background) Tunisian participants.

In 2012, the World Federation of Neurology (WFN) eLearning Task Force of the WFN Education Committee proposed an expansion of the ground-breaking Canada-Tunisia videoconference as reported in the World Neurology Newsletter (Vol.27 – No.1-February 2012). This interactive and live videoconference was held in late May 2011, two weeks into the Arab Spring Uprising. It demonstrated both the WFN vision to connect international centers throughout the world and the determination of Tunisia to participate in a global educational videoconference at a time of great disruption to its society.

Building on the success of the Canada-Tunisia international rounds, the WFN awarded an educational grant to expand this initiative into an Africa-Canada series involving Tunisia, Morocco and Canada. The grant was in conjunction with the Peter A. Silverman Global eHealth Program, and the international rounds are under the auspices of the Canada International Scientific Exchange Program (CISEPO), Canadian Neurological Sciences Federation, Division of Neurology, University of Toronto and Razi Hospital La Manouba, Tunis.

Carmela Tartaglia and hosts Morris Freedman, Sandra Black and Riadh Gouider initiated the series Jan. 15, 2014, with a presentation titled, “An Uncommon Cause of a Common Problem.”Audience participants included sites from Canada and Tunisia. This event, and the videoconference series as a whole, serve as a prime example of the WFN’s goal to foster quality neurology and brain health worldwide. This educational format promises to be of great benefit, especially to those countries where educational resources in neurology are limited despite the quest for knowledge.

The series also demonstrates the universality of health care as a common language bridging societies together.

“These rounds have the potential to bring together health care professionals from across the world in a forum that transcends cultural and political differences that may otherwise pose barriers to dialogue,” said Freedman. In addition, “the rounds provide an opportunity to share the differences and challenges across national boundaries,” said Whitehouse.

Providing a Tunisian point of view, Gouider said, “The importance of the International Behavioral Neurology Rounds are in the content and also in the collaborative teaching methodology. It demonstrates that language and time differences between continents may be easily bypassed.”

The connectivity is accomplished through the Internet and bridging, with each of the receiving sites having the appropriate videoconferencing equipment. The videoconferences are monitored and evaluated under the successful University of Toronto Behavioral Neurology Rounds that have been videoconferenced to provincial and international sites over the last 10 years.

The launch of Africa-Canada international behavioral neurology rounds will act as a beacon for the success of future programming and hopefully as a stimulus for additional international projects involving disciplines in other areas of neurology using the medium of videoconferencing.

Freedman is with the Department of Medicine, Division of Neurology, Baycrest and University of Toronto, Toronto, and the Rotman Research Institute, Baycrest, Toronto. Patterson is with the Department of Telehealth, Baycrest, Toronto, and the Canada International Scientific Exchange Program. Gouider is with the Department of Neurology, Razi Hospital La Manouba 2010-Tunis-Tunisia. Black is Brill Chair in Neurology, University of Toronto, Sunnybrook Health Sciences Center, Toronto, and Department of Medicine, Division of Neurology, Sunnybrook Health Sciences Center and University of Toronto, Toronto. Grief is with the Department of Psychiatry, Baycrest and University of Toronto. Whitehouse is with the Department of Neurology, Case Western Reserve University, Cleveland, Ohio, and Department of Medicine, Division of Neurology, University of Toronto, Toronto.

The History of the World Federation of Neurology

By Johan A. Aarli

The World Federation of Neurology (WFN) was founded in 1957 in Brussels. Although there had been international medical congresses before it, the London Congress of Medicine 1913 was a landmark in the general acceptance of neurology.

The First International Neurological Congress was held in 1931 in Berne. Subsequent meetings took place in London, Copenhagen, Paris and Lisbon. The plurality of several international congresses of neurosciences was one of the reasons the Brussels Congress in 1957 was named The First International Congress of Neurological Sciences.

The movers were two Americans and one European: Houston Merritt, Pearce Bailey Jr. and Ludo van Bogaert, respectively. In 1956, Merritt and Bailey proposed a world neurological federation at a meeting of the AmericanAcademy of Neurology. The National Institute of Neurological Diseases and Blindness (NINDB), National Institutes of Health, U.S., offered an annual grant of $126,190 (U.S.) for five years in order to get the federation started. By the end of 1962, the WFN Secretariat had received more than $500,000 from the original NINDB grant. Thirty-eight national delegates met in Brussels in 1957.

Van Bogaert from Antwerp, Belgium, was a respected neurologist, and the leading neuropathologist of his time. He was elected WFN president, Macdonald Critchley and Auguste Tournay were elected vice presidents and Pearce Bailey was elected secretary-treasurer general.

Van Bogaert established the first Project Commissions (later renamed Research Groups) consisting of international leaders of various sectors of neurology. A series of commissions were established, such as the Research Group on Extrapyramidal Disease organized by Melvin Yahr.

Van Bogaert believed that it was time to create a new and separate organization of the Research Groups. The name of the association would be the World Association of Neurological Commissions (WANC).

There was agreement that Adolphe Franceschetti should become the WANC president and David Klein vice president and secretary-treasurer general. Van Bogaert’s successor as president, Macdonald Critchley, thought this was wrong, and that the research arm was essential for WFN in order to survive. Van Bogaert’s presidency was successful, but ended in a financial crisis. He had described the three elements of his WFN rescue plan: the increase in annual dues, a decentralization plan and the new organization for the Problem Commissions. The differences of opinion had been dramatic, and John Walton’s proposal was to create a new organizational unit of the WFN — the Research Committee. The Problem Commissions were renamed Research Groups and organized in the new Research Committee.

Critchley became the next president. During his presidency, WANC became an integral part of the WFN. How could WFN now survive? Critchley was able to see that every cloud had a silver lining. He instilled a feeling of pioneer optimism in the organization. The work of the WFN not only continued, it flourished in spite of a miserable economy. The orientation of the federation remained truly international, harmonious and stimulating.

The reason lay in the vitality of the organization. No new administrative initiatives could be taken, but the activity that had been introduced in the Research Groups was high. How to balance the budget of the WFN?

Were the annual WFN dues too high? Since they had remained unchanged at $2 for 20 years despite inflation, the Finance Committee recommended the dues be raised to $5 on the basis of the WFN’s state of bankruptcy. The WFN accountants had to audit all financial statements of the WFN, including those of all Research Groups, and had to urge the national societies that were delinquent in paying their dues.

The Finance Committee also suggested that a Publications Subcommittee of WFN be formed and chaired by Professor Robert Daroff. The subcommittee was charged with development of resources from WFN-sponsored journals, starting with the contracts of the Journal of the Neurological Sciences, Journal of Neuroimmunology, Acta Neuropathologica and the WFN’s World Neurology newsletter. It also was decided to have the WFN accountants shift from a cash to an accrual method of accounting commencing Jan. 1, 1987. Any further increase in the number of WFN officers, which would progressively jeopardize WFN’s finances, was strongly discouraged.

The WFN Finance Committee recommended that a Fundraising Subcommittee be formed, chaired by Professor Helmut Lechner to investigate. Registration fees, advertisements, exhibit hall rentals and sponsorships were new sources of income.

John Walton took over as the new WFN president in 1998. One of the most central steps of the subsequent WFN re-organization was to establish a corporate status for the association. The impending appointment of officers based in different countries and continents made the creation of a new secretariat pressing. The committee structure had to be reviewed. Financial planning systems, including itemized annual budgets, were introduced and expenditure monitored by the treasurer and reported to the Finance Committee.

It was recommended to separate the offices of secretary-general and treasurer. Following the World Congress in Vancouver, Canada, in 1993, 50 percent of the profits were retained by the host society and 50 percent were transferred to the funds of the WFN, in return for the WFN administrative costs involved in planning the congress and program.

The WFN income increased because of the increase in annual dues and the royalties from its scientific journals. Developments in neurosciences had increased, and effective new drugs were available.

James Toole was the WFN secretary-treasurer general in Richard Masland’s administration. They managed to have the new WFN newsletter, World Neurology, survive, and it became an important communication medium for the federation. In 1989, Toole became the editor-in-chief of the Journal of Neurological Sciences.

The U.S. Congress in concert with President George H.W. Bush, declared the 1990s the “Decade of the Brain.” In response to a request by the Congress, the Advisory Council of the National Institute of Neurological Disorders and Stroke produced an implementation plan, focusing on 14 major disease categories in which neurological research gives promise of rapid progress for the coming decade. The plan called for increased allocations for basic and clinical neurosciences of $190 million in the first year, rising to $385 million per year in the latter part of the decade.

Jun Kimura was the first vice president in James Toole’s administration. He also chaired the Constitution and Bylaws Committee during the critical transition period from the “old” organization to the incorporated WFN. Many of these important projects stemmed from the Strategic Planning Meeting held in St. Albans in 2000, making steady progress in achieving some of the missions agreed upon during those intense discussions.

Johan Aarli had two main initiatives as president of the WFN. He articulated the need to study and develop creative methods to implement improved delivery and increased rural distribution of neurological health, “The Africa Initiative.” Second, he was determined to bring into the WFN the 1.2 billion people within The People’s Republic of China. This took place at the WFN’s Silver Jubilee in 2007.

The Council of Delegates remains the ruling body of the federation. WFN must hold an annual general meeting which all member societies are entitled to attend. It consists of the national delegates of the national neurologic associations. There is a quorum of a meeting of the Council of Delegates if the number of authorized delegates personally present is at least 15.

What’s in a Name?

From 1993, the president, the secretary treasurer general, the first vice president and the chairman of the research committee constituted the WFN Management Committee. Their function was to advise the Council of Delegates and the various committees of the issues of policy and day-to-day management. The WFN Steering Committee was disbanded when the new WFN was organized in 2001.

The WFN Trustees

One major element of the new WFN is the appointment of trustees: the president, the first vice president, the secretary-treasurer general, and three who are elected in accordance with the articles of association, and up to two co-opted individuals. The trustees are charity trustees who have control of the federation and its property and funds.

Two WFN members have contributed to this account of WFN’s history: Noshir Wadia: In Service of the WFN, and Jun Kimura: Internal Struggle in Kyoto.

EFNS & ENS Joint Congress: Where History Meets Neurology

By Gustave Moonen and Jacques De Reuck, co-chairs of the Congress Program Committee

Istanbul will host a special neurological event May 31 to June 3. It will be the first and only joint congress of the European Federation of Neurological Societies (EFNS) and the European Neurological Society (ENS). This will be a special event for two reasons.

First, the meeting itself: The missions of both the EFNS and ENS include promoting excellence in neurology throughout Europe. The practice of neurology rests upon both tradition and progress. Tradition means refined semiology based on clinicopathological correlations. Neurologists are the geographers of the nervous system. Their obsession is localization. Progress means science by which neurology moves from diagnosis to pathophysiology and treatment. Being present in Istanbul will allow neurologists to share their experiences and learn from colleagues from all parts of the world through 25 teaching courses, eight symposia, 23 focused workshops, five special sessions, three practical sessions, three interactive sessions and many satellite symposia. More than 2,000 oral and poster communications will be presented. Every subfield of neurology will be addressed. Visit JointCongressofEuropeanNeurology.org for information.

The second reason for being in Istanbul is that it will be a historical landmark in neurology. Both current European neurological societies will found the EuropeanAcademy of Neurology (EAN) that will, starting in Istanbul, be the unique European society covering all fields of neurology. The EAN board of directors, including its first president, will be elected on June 3 by an assembly of 90 delegates, 45 appointed by national societies (the EFNS root) and 45 elected by ENS individual members (the ENS root).

It is symbolic that this event will happen in Istanbul pointing out that the EuropeanAcademy of Neurology will be an open society, open to interaction with patient organizations, open to other fields of medicine, open to cutting-edge basic and clinical neuroscience and open to other parts of the world through its commitment to the World Federation of Neurology.

The first EAN Congress will be June 20-23 in Berlin. This is another major event that neurologists should not miss. We look forward to seeing you in Istanbul!

Developing the Brain Disorders Program

Donald H. Silberberg

The cover story of World Neurology describes the 10th anniversary celebration of the NIH/Fogarty International Center (FIC) funding program “Brain Disorders in the Developing World: Research Across the Lifespan.” The success of the program and the thrilling opportunity to participate in the anniversary celebration, leads me to describe my role in each stage of the Brain Disorders program development. In this column, I will describe my efforts to bring neurologic, psychiatric and developmental disorders to the attention of international health agencies and funders, ultimately resulting in the final program.

In 1988, The World Bank had about $4 billion in loans outstanding to developing countries (now termed low and middle income countries or LMICs) related to health, but no real structure to guide further investments. At that time, the World Health Organization (WHO) had a small division with little funding that focused on mental health and epilepsy.

The World Bank recognized the need to develop a more systematic approach to its funding. With the guidance of several foundations and the WHO, The World Bank commissioned Dean Jamison, Alan Lopez and Christopher Murray to review data and help develop background for what became the bank’s 1993 annual report, “Investing in Health.” This report was The World Bank’s first annual report to deal with health.

I was privileged to be one of the contributors to this effort, which set the stage for what followed. As an aside, the Global Burden of Disease (GBD) metric was developed and refined by Jameson, Lopez and Murray during their work on this project.

My participation in the work leading up to The World Bank’s annual report in turn led to the opportunity to be part of the Geneva-based Global Forum for Health Research (GFHR). The GFHR was organized by international health leaders from many institutions and countries to help develop an overall strategy for improving efforts to address health problems in LMICs. It is perhaps best known for coining “The 10/90 Gap,” which represents the fact that only 10 percent of global resources address the 90 percent of people who live in LMICs, and conversely that 90 percent of those resources target the 10 percent who live in wealthy countries.

As part of their efforts, the GFHR offered competitive grants for the purpose of developing studies and reports dealing with specific problems. I applied for and received $150,000 as funding to develop a study of brain disorders in developing countries. I proposed to the Institute of Medicine (IOM) that they serve as the group to help develop the study. The IOM’s process is to assemble a team to discuss and then write the components of a study destined to become an IOM report. The process takes about one year to complete. I helped to establish the team of neurologists, psychiatrists, epidemiologists and social scientists who wrote the report that subsequently became the 2001 Institute of Medicine Report “Neurologic, Psychiatric and Developmental Disorders: Meeting the Challenge in the Developing World.”

The title that we chose for the study and report reflected the team’s wish to represent all disorders affecting the nervous system throughout the lifespan.

One of our key recommendations was to establish a fund to promote research designed to ameliorate the major problems of those with nervous system disorders in LMICs. This recommendation, which at the time seemed much more like hope than reality, materialized in the form of the FIC/NIH Brain Disorders program. The way in which that happened was as follows: The grant from the GFHR was not adequate to cover the IOM’s costs of conducting the study and publishing the report. In the course of developing the additional funding that was needed, Gerald Keusch, then-director of NIH’s FIC, contributed and then saw the need and opportunity for Fogarty to develop the funding program, “Brain Disorders in the Developing World: Research Across The Lifespan,” that has been such a spectacular success. The FIC’s initiative required that relevant NIH Institutes, notably the National Institutes of Mental Health, Neurological Disorders and Stroke, Child Health and Development, contribute financially and programmatically. This, in turn, has served as a significant stimulus to these institutes to develop additional grant programs that focus on problems in LMICs.

It is likely that the IOM Report and/or the Brain Disorders Program also have served to stimulate the development of research and service programs by other agencies and governments around the world.

I hope that this description of my role in the development of the Brain Disorders program will help to illustrate the fact that one individual, reaching out to colleagues can make a difference in developing approaches to address neurologic, psychiatric and developmental problems, whether locally or globally.

Brain Disorders in the Developing World

(From left to right) Donald Silberberg, MD, University of Pennsylvania, Philadelphia; Kathleen Michels, PhD, program officer and neuroscience cluster coordinator, Division of International Research and Training, Fogarty International Center (FIC); Nalini P. Anand, JD, MPH, director, Division of International Science Policy, Planning and Evaluation, director, Center for Global Health Studies, Bethesda, Md.; and Raj Kalaria, PhD, FRCP, professor of neuropathology, IBRO-WFN liaison officer, Newcastle University, Newcastle upon Tyne, U.K

By Donald Silberberg, editor-in-chief

Since its inception 10 years ago, the program “Brain Disorders in the Developing World: Research Across the Lifespan,” has funded research that, to date, has resulted in the publication of 435 peer-reviewed articles, plus 14 books or book chapters, and facilitated long-term training of at least 138 scientists in 44 low and middle income countries (LMICs).

In order to be eligible to apply, each project must include a team of investigators, at least one in the U.S. or another high-income country, plus one or more collaborators in a LMIC. In addition to the likelihood of accomplishing significant research, each project is expected to further the research capabilities of the LMIC partners. Importantly, almost all LMIC trainees received their mentoring in their home countries. The total funding, to date, collectively from the Fogarty International Center (FIC) and other National Institutes of Health, is approximately $84 million. The research findings from many projects have had significant impacts, leading to improved approaches to treatment and helping LMICs to develop health care policy. Policy responses range from establishing the first surveillance system for retroviral and viral meningoencephalitis in Peru, to bringing fetal alcohol syndrome to the attention of Russian leadership and key health officials.

This exciting and important symposium, with almost 400 registrants, featured 65 oral presentations and more than 100 scientific poster exhibits by grantees. Presenters described research results and projects under way in every continent except Antarctica. The subjects were diverse: epidemiological studies of neurodevelopmental disorders in India, South Africa and Uganda. They also were as specific as the management of head trauma in Latin America and prevention of neurocysticercosis in Burkina Faso. Following the symposium, 28 neurologists, neurosurgeons, epidemiologists and basic neuroscientists met for two days to begin the process of writing papers. The papers looked at future needs and opportunities for clinical and basic neuroscience research designed to address neurologic and psychiatric disorders across the lifespan in LMICs. These will be published as a supplement to a journal, with Donald Silberberg and Rajesh Kalaria serving as co-editors.

The Brain Disorders program has been coordinated since its inception by Kathleen Michels, PhD, Division of International Research and Training, FIC. The Writing Project is being coordinated by Nalini P. Anand, JD, MPH, director, Division of International Science Policy, Planning and Evaluation and Director, Center for Global Health Studies, FIC.

Opportunities for obtaining funding for research through this NIH program can be seen at fic.nih.gov.

In Memoriam: Ted Munsat

By John Walton (Lord Walton of Detchant) Kt, TD, MA, MD, DSc, FRCP, FMedSci

John Walton

Ted Munsat was a close and much-valued friend whom I admired as a man, as a neurologist, as a teacher, and as an administrator and lifelong supporter of the World Federation of Neurology. I first met him many years ago (more years than I can remember with accuracy) when we both attended a conference in the United States on neuromuscular disease. I recognized at once that here was a man of outstanding ability and exceptional merit. Subsequently, we corresponded, and I think we even wrote one short paper together.

But perhaps my memory is sharpest of the time that he came to spend a year in my department in Newcastle. During that time, working with Peter Hudgson and others, he did some important original work leading to the publication of a number of papers, and he was widely respected and admired by the junior staff and by those working in research in the Muscular Dystrophy laboratories.

He was an immensely approachable man, full of advice and sensible comments. His contributions to the department’s work were exceptional, and I remember how proud he was when his young son took up soccer at a Newcastle school and ended up playing for the junior first team, where he was regarded as one of its stars.

Subsequently, I kept in close touch with him when he became head of department in Boston, and I forgave him, eventually, for stealing Walter Bradley from Newcastle to work with him, before Bradley went off to independent chairs, first in New Hampshire and later in Miami.

We continued to keep in close touch, and I was impressed with the work that he did on various WFN committees, and above all his contributions to continuing education in neurology through the publication of Continuum.

His wife Carla was a great charmer with a wonderful, twinkling attitude about life. They loved the social life in Newcastle, and later still, I met them both on many occasions at international meetings, and shared not only reminiscences but also their joint views about the future of neurology on a worldwide scale. Munsat has left a mark on international neurology that can never be erased, and he will be remembered by all who knew him with respect, pleasure and affection.