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The Global Neurology Research Group is dedicated to finding practical and cost-effective solutions to meet the neurological needs of individuals in developing countries.
Neurological disorders such as epilepsy, stroke, dementia and traumatic brain injuries are more common in low- and middle income countries, where 86% of the world’s population is concentrated.
These neurological disorders can be disabling both physically and mentally, and there is a high human and economic cost associated with them. Many of these diseases come with a stigma attached since they are often misunderstood.
Compounding this problem is that many of these diseases are not well diagnosed or treated due to a lack of trained neurologists and limited access to medical care in these settings.
When last studied, there were 12 African countries with no neurologists, and an additional 23 countries with a ratio of one neurologist to more than five million people in the population.
The Global Neurology Research Group at Mass General works on projects designed to improve the diagnosis, care and treatment of neurological diseases in these resource-limited settings.
For Rare Disease Day we are highlighting neuromyelitis optica (NMO) and Farrah Mateen, PhD, the Mass General neurologist dedicated NMO research.
"The science of NMO is fascinating to me and I have been very excited to see how much the field has changed over the past decade. I have been inspired by many patients along the way, and I consider each of them essential in the fight to understand, treat, and one day cure NMO."
(Click on the image above for a closer view)
Between July and November of 2018, the Global Neurology Research Group surveyed physicians in over 140 across the globe about diagnosis and treatment practices for neuromyelitis optica (NMO). We received complete responses from 60 countries spanning a range of geographic regions and income levels. These responses helped us understand the extent to which income level and geographic region may affect a physician’s ability to treat and even diagnose the disease.
In one of our key results, we found that physicians in lower-income countries appear to have a markedly reduced access to the newest generation of NMO diagnostic tests. This especially holds true for countries in Africa and the Eastern Mediterranean. This is important because NMO is often confused with another, similar disease – multiple sclerosis – but the treatments for the two diseases are different. Without access to the best diagnostic tools, patients in low-income countries might not receive the best care possible.
A team photo from the Global Neurology Research Group's recent trip to Guinea.
Dr. Mateen spoke at the Regional Rare Neuro-Immune Disorders Symposium in Boston on Oct. 27. The event offered education and advocacy for families, caregivers and patients with acute disseminated encephalomyelitis (ADEM), MOG antibody-associated disease (MOG-Ab disease), neuromyelitis optica spectrum disorder (NMOSD), optic neuritis (ON), and transverse myelitis (TM) (including the subtype acute flaccid myelitis). Learn more.
Sincere thanks to Sumaira Ahmed, of the Boston-based Sumaira Foundation, for her Foundation's support of the Mass General Global Neurology Research Group. We are now conducting a worldwide survey of neuromyelitis optica diagnosis and treatment through a grant from the Sumaira Foundation.
The first Treatment and Research in Multiple Sclerosis online (triMS.online) conference was completed successfully on November 27, 2018. This conference was steered by a diverse committee of scientists, including Dr. Mateen, from five continents. The conference, which included a debate on cognition monitoring in MS care, enabled MS specialists from across the globe to learn and debate the clinical practice of MS treatment without the time and expense of international travel
Listen to the Interview with Le Grand Direct Radio Espace
Parents wait while their children receive smartphone EEGs at the Ignace Deen Hospital, August 2018
Team dinner for the Global Neurology Research Group and collaborating research physicians from the Ignace Deen Hospital, August 2018.
The Global Neurology Research team and Guinean collaborators following an interview on Radio TV Guinea, the national news network based in Conakry. The team discussed the proposed project as well as causes of epilepsy and available treatment in Guinea. (Left to right: Dr. Cisse Fode Abass, Dr. Tasseou Naramatou, Dr. Farrah Mateen, Sara Grundy, RTG host)
Neurology residents outside the neurology department at Ignace Deen Hospital in Conakry, Guinea.
A young epilepsy patient who presented with her father at Ignace Deen Hospital for a consultation.
Entrance to Ignace Deen Hospital, one of two University hospitals in Conakry.
Intensive Care Unit at Ignace Deen Hospital in Conakry, Guinea.
Young epilepsy patient who presented to the Ignace Deen Hospital for a consultation with her mother.
A family waits to be seen at the epilepsy clinic.
A young epilepsy patient displaying injuries acquired as a result of a seizure.
Burns on the arms of one patient as a result of falling in a fire while having a seizure.
Dr. Sakadi Foksuna recording clinical data during an epilepsy consultation.
Research team outside Ignace Deen Hospital.
Dr. Tasseou Naramatou [left] and Dr. Farrah Mateen [right] at Jardin 2 Octobre Park in Conakry, Guinea
The Global Neurology Research Group in collaboration with neurology resident physicians at the Ignace Deen Hospital in Conakry, the capital city of the Republic of Guinea in West Africa, consulted on >130 new patients with epilepsy this month. Guinea is a low-income country, recently publicized for surviving a large Ebola outbreak.
Radio Television Guinea covered our epilepsy research endeavor and announced the free consultations and medicines to people with epilepsy, bringing in patients from throughout the country. Several patients came from far away (as far as 800 kilometers, or more than one day's travel). Many patients had seizure related burns and injuries and reported >100 seizures each. Traditional medicines were as common as antiepileptic drug provision.
This new partnership with the neurology team in Guinea—including residents from Niger, Benin, Chad, Cameroon, and Guinea itself—is meant to de-stigmatize epilepsy, provide care and support to patients and practitioners, promote medication treatment, and ultimately bring epilepsy "out of the shadows" in one of the world's lowest income countries.
Farrah Mateen, MD, PhDAssociate Professor of Neurology, Harvard Medical School, Boston, MA, USA
Lhab Tshering, BScResearch CoordinatorJigme Dorji Wangchuck National Referral Hospital Thimphu, Bhutan
Andre Vogel, BAClinical Research Coordinator Massachusetts General HospitalBoston, MA, USA
Gladia Hotan, PhD candidateNeuroscienceMassachusetts Institute of TechnologyCambridge, MA, USA
Mike Schaekermann, PhD candidateComputer ScienceUniversity of WaterlooWaterloo, ON, Canada
Whitney Fitts, BAHarvard Medical SchoolBoston, MA, USA
Andrew Siyoon HamHarvard College, Class of 2022A.B. candidate in NeuroscienceSecondary in Global Health and Health Policy
Dylan RiceHarvard College, Class of 2020A.B. candidate in Cognitive Neuroscience and Evolutionary PsychologySecondary in Global Health and Health Policy
Joe Cohen, BScChief EEG Technician Massachusetts General HospitalBoston, MA, USA
Pria Anand, MDAdvanced General and Autoimmune Neurology FellowMassachusetts General HospitalBoston, MA, USA
Katie Holroyd, MDNeurology ResidentPartners HealthCare/Harvard Medical SchoolBoston, MA, USA
Robert Regenhardt, MD, PhDStroke Fellow Massachusetts General HospitalBoston, MA, USA
Michael P.H. Stanley, MDNeurology Resident Partners HealthCare/Harvard Medical School Boston, MA, USA
Jennifer Williams, MD, MRCPIEpilepsy Fellow Massachusetts General Hospital, Boston, MA, USA
Fode Abass CisseAssociate Professor, Neurology, Ignace Deen Teaching HospitalConakry, Republic of Guinea
Seif Ismail, MBBSMuhimibili National HospitalDar es Salaam, Tanzania
Nana Rahamatou Tassiou (Niger)Neurology Resident Ignace Deen Teaching HospitalConakry, Republic of Guinea
Foksouna Sakadi (Chad)Neurology Resident Ignance Deen Teaching HospitalConakry, Republic of Guinea
Mahmoud AbdelRazek, MD Neurology Fellow, Massachusetts General Hospital, Boston, MA, US
Kate Brizzi, MDAdvanced General Neurology Fellow, Massachusetts General Hospital, Boston, MA, USA
Veronica Bruno, MDMPH student, Harvard T.H. Chan School of Public Health, Boston, MA, USA
Sarah Clark, BScProject Manager, Massachusetts General Hospital, Boston, MA, US
Maggie Cochran, BSc Harvard Medical School, Boston, MA, USA
Sonam Deki, BCommResearch Coordinator, Jigme Dorji Wangchuck National Referral Hospital, Thimphu, Bhutan
Megan Diamond, SM Massachusetts General Hospital, Boston, MA, USA
Sara Grundy, BAProject Manager, Massachusetts General Hospital, Boston, MA, USA
Melissa Houghton Summer Intern, Duke University, Undergraduate Student
Aline Herlopian, MDClinical Neurophysiology/Epilepsy Fellow, Massachusetts General Hospital, Boston, MA, USA
Geetha Iyer, MBBS, SCM, PhD candidate T. H. Chan Harvard School of Public Health, Boston, MA
Minnie Jang, AB CandidateHarvard College, Cambridge, MA, USA
Diederik Koelman, BScMaster's Student, Academic Medical Center, Amsterdam, The Netherlands
Alice Lam, MD Epilepsy Fellow, Massachusetts General Hospital, Boston, MA, USA
Tullia Leib Co-op Student, Northeastern University, Boston, MA, USA
Natalie Cornay Manalo, MDAdvanced General and Autoimmune Neurology Fellow, Massachusetts General Hospital, Boston, MA, USA
Jo Mantia EEG Technician, Sunnybrook Hospital, Toronto, Canada
Erica McKenzie, BScMedical Student, Queen's University, Ontario, Canada
Bryan Patenaude, MAPhD Candidate, Harvard T.H. Chan School of Public Health, Boston, MA, USA
Altaf Saadi, MDNeurology Resident, Brigham and Women's Hospital & Massachusetts General Hospital, Boston, MA, USA
Lance Shaull, BAAssociate Coordinator, Massachusetts General Hospital, Division of Global Health and Human Rights
Tali Sorets High School Student, Buckingham, Brown & Nichols, Cambridge, MA, USA
Michael P.H. Stanley, BAMedical Student, Tufts University School of Medicine, Boston, MA, USA
Stanley Wanjala, MA Sagam Community Hospital, Sagam, Kenya
Leah Wibecan, MD, MPHPediatric Neurology Resident, Massachusetts General Hospital, Boston, MA, USA
Emma Wolper, BAResearch Assistant, Lesley University, Cambridge, MA, USA
Brian Wong, MDPediatric Neurology Fellow, University of Southern California, Los Angeles, CA, USA
Janice Wong, MD Neurology Resident, Brigham and Women's Hospital & Massachusetts General Hospital, Boston, MA, USA
Rodrigo Zepeda, MD Epilepsy Fellow, Massachusetts General Hospital, Boston, MA, USA
Jason ZhaoHigh School Student, Boston Latin School, Boston, MA, USA
Neuromyelitis optic (NMO) is a demyelinating disease of the optica nerve and spinal cord. Despite recent advances in the treatment and diagnosis of NMO, little is known about the global availability of diagnostic tests and medications for the disease. We surveyed physicians from over 120 different countries on the availability, affordability, and accessibility of a variety of clinical options to diagnose and treat neuromyelitis optic (NMO).
When faced with clinical symptoms of multiple sclerosis (MS), a neurodegenerative condition, patients and physicians can be uncertain of how to proceed. There are multiple diseases that mimic the symptoms of MS; some of them require special treatment and care. A blood test for MS could allow physicians to more confidently direct the care of their patients; unfortunately, no such blood test currently exists. But there is evidence that platelet RNA signatures may change in MS patients. We are analyzing the blood of MS patients, healthy patients, and patients with MS-mimicking diseases to determine whether there is a platelet-based RNA signature that can help confirm diagnosis of multiple sclerosis
Fatigue is the most commonly reported symptom among people living with MS, and more than a quarter report fatigue as their most disabling symptom. We are conducting a double-blind, placebo-controlled clinical trial to determine whether light therapy can be used as a treatment for MS-related fatigue
Resources for the multiple sclerosis light therapy study:
Fluoxetine has shown promise as a pharmacological treatment for motor recovery after stroke, but its use for such indications has not been tested in the low-income countries that bear the greatest burden of stroke disability and mortality.
In the MAMBO (Kiswahili for “Hello”) clinical trial, we will test the safety and tolerability of fluoxetine for post-stroke motor recovery in Tanzania. Funded by the National Institutes of Health.
The group is conducting a clinical study to test the feasibility of using a smartphone-based electroencephalograph (EEG) system to diagnose patients with epilepsy in Bhutan, a small, land-locked country between China and India, and Guinea, a country on the Atlantic coast of Africa bordered by Mali and Sierra Leone. Funded by the Charles Hood Foundation, the Harvard University Asia Center and the National Institutes of Health (NIH).
Resources for the Smartphone EEG project:
Stroke is the leading cause of mortality globally, and lower-income countries are the most severely affected. There is a high burden of stroke in Tanzania, a low income country in sub-Saharan Africa.
In this study we aim to characterize the risk factors, including HIV, for post-stroke disability, mortality, and depression.
Study sponsor: Harvard University Center for AIDS Research
Preliminary data suggest that retinal nerve fiber layer measurements may be surrogate markers of early life cortical development. Embryologically, the retina shares derivation with the cerebral cortex, but unlike the cortex, can be visualized non-invasively through a new technology, optical coherence tomography (OCT).
OCT is a portable, affordable, painless, noninvasive medical instrument and has supportive scientific evidence as a surrogate marker of gross measures of neurodevelopment in specific disease states. Interpretation of RNFL thicknesses are automated and colorized so that lay community health care workers can be trained to make basic readings in the field.
We aim to determine whether handheld, noninvasive OCT equipment can reliably assess brain development through measurements of retinal nerve fiber layers in early life and be an effective screening test for some forms of abnormal early life brain development.
The Global Neurology Research Group at the Massachusetts General Hospital (MGH), which Dr. Mateen (PI) lead, has a list of free educational resources for patients and investigators including survey instruments and links to publications. The survey instruments will also be included as appendices in any published papers.
This is the clinical and demographic survey form we have developed for the continuation of the epilepsy study in Bhutan and Guinea. The survey is designed to collect important data for those with epilepsy in resource-limited settings including questions about seizure frequency, diagnosis, treatment, social networks, depression, and sleep quality. Please feel free to download the survey and modify for use in other countries as needed.
Download a PDF version of the women's health and epilepsy survey.
Please see our short feature documentary on epilepsy in Bhutan, which received the 2015 American Academy of Neurology Film Festival Award.
My Thinking Cap is a coloring book about epilepsy, a brain disorder that affects people of any age. It is a fun and easy way to help kids and their families begin to understand more about epilepsy. This book can be especially useful for children in countries where epilepsy remains misunderstood. Stigma towards people with epilepsy persists everywhere.
Rengenhardt RW, Biseko MR, Shayo AF, Mbando TN, Grundy SJ, Xu A, Saadi A, Wibecan L, Kharal GA, Parker R, Klein JP, Mateen FJ, Okeng'o K. Opportunities for intervention: stroke treatments, disability and mortality in urban Tanzania International Journal of Quality Health Care. 2018 August 28
Jang M, Sakadi F, Tassiou NR, Abass CF, Grundy SJ, Woga A, Kenda BA, Lamine CM, Talibe BA, Qui H, Cohen JM, Carone M, Mateen FJ. Impact of Poorly Controlled Epilepsy in the Republic of Guinea. Seizure. 2018 October
Saadi A, Okeng'o K, Biseko MR, Shayo AF, Mmbando TN, Grundy SJ, Xu A, Parker RA, Wibecan L, Iyer G, Onesmo PM, Kapina BN, Regenhardt RW, Mateen FJ. Post-stroke social networks, depressive symptoms, and disability in Tanzania: A prospective study.Int J Stroke. 2018 Jan 1:1747493018772788.
AbdelRazek MA, Gutierrez J, Mampre D, Cervantes-Arslanian A, Ormseth C, Haussen D, Thakur KT, Lyons JL, Smith BR, O'Connor O, Willey JZ, Mateen FJ. Intravenous Thrombolysis for Stroke and Presumed Stroke in Human Immunodeficiency Virus-Infected Adults. Stroke. 2018; 49:228-231
Mateen FJ, Manalo NC, Grundy SJ, Houghton MA, Hotan GC, Erickson H, Videnovic A. Light therapy for multiple sclerosis-associated fatigue: Study protocol for a randomized controlled trial. Medicine (Baltimore) 2017;96(36):e8037.
Mateen FJ, Carone M, Tshering L, Dorji C, Dema U, Grundy SJ, Pokhrel DR, Nirola DK. Areca catechu (palm tree) nut chewing and seizures: An observational study. Epilepsy & Behavior 74 (2017) 76-80.
Bruno V, Klein JP, Nidup D, Nirola D, Tshering L, Deki S, Clark SJ, Linn KA, Shinohara RT, Dorji C, Pokhrel DR, Dema U, Mateen FJ. Yield of Brain MRI in Clinically Diagnosed Epilepsy in the Kingdom of Bhutan: A Prospective Study. Annals of Global Health. 7 April 2017
McKenzie ED, Lim AS, Leung EC, Cole AJ, Lam AD, Eloyan A, Nirola DK, Tshering L, Thibert R, Garcia RZ, Bui E, Deki S, Lee L, Clark SJ, Cohen JM, Mantia J, Brizzi KT, Sorets TR, Wahlster S, Borzello M, Stopczynski A, Cash SS, Mateen FJ. Validation of a smartphone-based EEG among people with epilepsy: A prospective study. Sci Rep 2017;7:45567.
Koelman DL, Benkeser DC, Xu Y, Neo SX, Tan K, Katsuno M, Sobue G, Natsume J, Chahin S, Mar SS, Venkatesan A, Chitnis T, Hoganson GM, Yeshokumar AK, Barreras P, Majmudar B, Carone M, Mateen FJ. Acute disseminated encephalomyelitis in China, Singapore and Japan: a comparison with the USA. Eur J Neurol. 2016 Eur J Neurol 2017;24(2):391-396.
Saadi A, Patenaude B, Mateen FJ. Quality of life in epilepsy-31 inventory (QOLIE-31) scores: A global comparison. Epilepsy Behav. 2016 Dec;65:13-17 Review.
Brizzi K, Pelden S, Tshokey T, Nirola DK, Diamond MB, Klein JP, Tshering L, Deki S, Nidup D, Bruno V, Dorny P, Garcia HH, Mateen FJ; Bhutan Epilepsy Project. Neurocysticercosis in Bhutan: a cross-sectional study in people with epilepsy.Trans R Soc Trop Med Hyg. 2016 Sep;110(9):517-526.
Saadi A, Patenaude B, Nirola DK, Deki S, Tshering L, Clark S, Shuall L, Sorets T, Fink G, Mateen F. Quality of life in epilepsy in Bhutan. Seizure. 2016 Jul;39:44-8.
Koelman DL, Chahin S, Mar SS, Venkatesan A, Hoganson GM, Yeshokumar AK, Barreras P, Majmudar B, Klein JP, Chitnis T, Benkeser DC, Carone M, Mateen FJ. Acute disseminated encephalomyelitis in 228 patients: A retrospective, multicenter US study. Neurology. 2016 May;86(22):2085-93.
Brizzi K, Deki S, Tshering L, Clark SJ, Nirola DK, Patenaude BN, McKenzie ED, McLane HC, Cash SS, Dorji C, Mateen FJ. Knowledge, attitudes and practices regarding epilepsy in the Kingdom of Bhutan. Int Health. 2016 Jul;8(4):286-91.
McKenzie ED, Nirola DK, Deki S, Tshering L, Patenaude B, Clark SJ, Cash SS, Thibert R, Zepeda R, Leung EC, Lam AD, Lim AS, Mantia J, Cohen J, Cole AJ, Mateen FJ. Medication prescribing and patient-reported outcome measures in people with epilepsy in Bhutan. Epilepsy Behav. 2016;59:122–7.
McLane HC, Berkowitz AL, Patenaude BN, McKenzie ED, Wolper E, Wahlster S, Fink G, Mateen FJ. Availability, accessibility, and affordability of neurodiagnostic tests in 37 countries. Neurology. 2015;85(18):1614–22.
Koelman DLH, Mateen FJ. Acute disseminated encephalomyelitis: current controversies in diagnosis and outcome. J Neurol. 2015 Sep;262(9):2013–24.
Sorets TR, Mateen FJ. Mandatory CPR Training in US High Schools. Mayo Clin Proc. 2015 Jun;90(6):710–2.
Saadi A, Mateen FJ. The internationalization of the American Academy of Neurology. Neurology. 2015 Feb;84(8):856–8.
McKenzie ED, Spiegel P, Khalifa A, Mateen FJ. Neuropsychiatric disorders among Syrian and Iraqi refugees in Jordan: a retrospective cohort study 2012-2013. Confl Health. 2015;9:10.
Congratulations to Bryan Patenaude, who defended his doctoral work ("Health, Behavior & Economic Analysis: Preference Elicitation Biases and the Welfare Consequences of Health Interventions in Sub-Saharan Africa") on April 11, 2017.
This event, held in the Etherdome at Massachusetts General Hospital, provided attendees with the opportunity to learn firsthand about the struggles of medical providers working in Aleppo, Syria. The presentation was sponsored by the Massachusetts General Hospital Global Neurology Research Group and the Syrian-American Medical Society. Download the program
Dr. Mateeen is the co-leader on a research study that is currently recruiting participants 18+ years old with multiple sclerosis-related fatigue. Download flyer
Congratulations to Kate Brizzi, Sonam Paydon, Tshokey, Damber Nirola, Lhab Tshering, and colleagues on their publication on neurocysticercosis among people with epilepsy in Bhutan. This study suggests a significant proportion of epilepsy in Bhutan is treatable and preventable.
It also guides the use of diagnostic tests for Taenia solium, a parasitic tapeworm, through research performed by the Neurocysticercosis Working Group referral lab in Lima with Professor Hugo Garcia and the Bhutanese medical laboratories in Thimphu.
The Bhutan Epilepsy project was referenced in a recent article in Nature. "[Dr. Mateen's] study of 205 people with epilepsy in Bhutan, now in review at a journal, showed that the app could reliably detect this neural activity — allowing health-care workers with little training to identify the type of epilepsy someone has and which drug could best treat it."
The Global Neurology Research Group team is pleased to join the The Health and Aging Study in Africa: A Longitudinal Study of an INDEPTH Community in South Africa (HAALSI) at the University of Witwatersrand in Agincourt, South Africa this month.
Farrah Mateen, MD, PhD, divides her time between seeing patients at Massachusetts General Hospital and traveling across the globe researching innovative solutions for global neurological care.
The Global Neurology Research Group would like to thank our funding partners for helping to make our research possible.
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