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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.
See recent highlights from the Global Neurology Research Group
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.
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 11th.
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
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
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. Learn more about HAALSI
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.
Dr. Mateen presented a lecture on demyelinating diseases of the central nervous system at the Mexican Academy of Neurology on Oct. 31, 2016. Learn more
Congratulations to Sara Grundy won 3rd place in this year’s MGH’s Got Talent Photo Contest for the ‘Places’ category! The picture was taken at a temple near Paro in Bhutan from our trip in August.
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.
Clinical Research Coordinator Sara Grundy writes about her experiences working with clinical trial participants in Bhutan in this article from the Center for Global Health at Mass General.
On August 20th, we held a continuing medical education open forum on epilepsy in Bhutan at the Khesar Gyalpo University of Medical Sciences of Bhutan in Thimphu, chaired by Bhutan's first modern psychiatrist, Dr. Chencho Dorji.
Gladia Hotan, PhD candidateNeuroscience, Massachusetts Institute of Technology, Cambridge, MA, USA
Geetha Iyer, MBBS, SCM, PhD candidate T. H. Chan Harvard School of Public Health, Boston, MA
Diederik Koelman, BScMaster's Student, Academic Medical Center, Amsterdam, The Netherlands
Joe Cohen, BScChief EEG Technician, Massachusetts General Hospital, Boston, MA, USA
Jo Mantia EEG Technician, Sunnybrook Hospital, Toronto, Canada
Robert Regenhardt, MD, PhDNeurology Resident, Massachusetts General Hospital, Boston, MA, USA
Leah Wibecan, MD, MPHPediatric Neurology Resident, Massachusetts General Hospital, Boston, MA, USA
Melissa Houghton Duke University, Undergraduate Student
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
Sonam Deki, BCommResearch Coordinator, Jigme Dorji Wangchuck National Referral Hospital, Thimphu, Bhutan
Megan Diamond, SM Massachusetts General Hospital, Boston, MA, USA
Aline Herlopian, MDClinical Neurophysiology/Epilepsy Fellow, Massachusetts General Hospital, Boston, MA, USA
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
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
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
Testing the smartphone-based EEG in Bhutan.
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. Funded by the Charles Hood Foundation and the Harvard University Asia Center.
Resources for the Smartphone EEG project:
OCT testing in Bhutan
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.
Resources for the OCT in brain development study
The research team in Tanzania
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.
Resources for the Post-Stroke Study:
Fatigue is the most commonly reported symptom among people living with MS, and more than a quarter report fatigue as their most disabling symptom. This research study is to investigate if light therapy can be a potential treatment option for MS-related fatigue.
Resources for the multiple sclerosis light therapy study:
This is the survey form that we have developed to conduct intake surveys with epilepsy study participants in Bhutan. The survey is designed to collect important data for those with epilepsy in resource-limited settings. Please feel free to download the survey and modify for use in other countries as needed.
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.
Bruno V, Klein JP, Nidup D, Nirola D, Tshering L, Deki S, Clark SJ, Linn KA, Shinohara RT, Dorji C, Pokhrel DR, Dema U, Matten 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.
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