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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.
Lhab Tshering, Research Coordinator for the Bhutan Epilepsy Project, organized an event in celebration of International Epilepsy Day hosted in Bhutan. The theme of the event was “Creating Awareness for All” and was the first epilepsy awareness event held in Bhutan.
Young epilepsy patient receives a smartphone EEG at Ignace Deen Hospital.
Young epilepsy patient who presented to the Ignace Deen Hospital for an EEG and consultation with his mother.
Dr. Mateen and epilepsy patient at Ignace Deen Hospital
Lhab Tshering, Research Coordinator for the Bhutan Epilepsy Project, organized an event in celebration of International Epilepsy Day hosted in Bhutan.The celebration included talks about epilepsy, a skit about seizures and first aid, performances by local musicians, and a question and answer session. The event was attended by over 400 people.
Smartphone EEG caps ready for a day of seeing patients
The Global Neurology Research team and Guinean collaborators.
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.
Order from the Coolidge Corner location of Otto's Pizza in Brookline on Monday, May 21, from 5 pm to 9 pm, to help support the Global Neurology Research Group! A percentage of every sale between will be donated to the research group. ORDER ONLINE at: https://otto-brookline.foodtecsolutions.com/menu OR CALL 617-232-0014
The Sumaira Foundation for NMO aims to generate global awareness of Neuromyelitis Optica Spectrum Disorder [NMOSD] while raising funds to help find a cure.
Post-stroke social isolation is associated with more depressive symptoms in Tanzania. Understanding social networks and the associated mechanisms of recovery in stroke is especially relevant in the context of limited resources. Download a PDF of the study.
Sara Grundy (above), and Minnie Jang (below) presented posters at the MassGeneral Hospital for Children's Pediatric Research Day on March 20th.
Dr. Mateen was recently interviewed about her efforts to improve epilepsy diagnosis and care in the African country of Guinea.
In recognition of National Multiple Sclerosis Awareness month, Farrah Mateen, MD, PhD, of the Multiple Sclerosis Clinic at Massachusetts General Hospital, discusses treatment options for MS patients and how research could help in diagnosing and monitoring the disease.
Chad is a landlocked country in central sub-Saharan Africa with high rates of poverty and violence. Common neurological infections include cerebral malaria, tuberculosis of the central nervous system and HIV/AIDS, including opportunistic coinfections. Neurological conditions including stroke, sickle cell-related cerbrovascular events, epilespy and neurological sequele of herniated invertebral discs are also common.
Thanks to Otto Pizza for their fundraiser to support the Global Neurology Research Group on Feb. 5 as part of their Good Food, Good Causes campaign. Don't miss our next Otto's Pizza fundraiser at their Brookline location on Monday, May 21, from 5:00 pm to 9:00 pm.
Robert Regenhardt, MD, PhD, a Mass General neurology resident, wrote this blog post about his recent trip to the African country of Tanzania. "My first day of rounding on the Neurology Ward at Muhimbili National Hospital (MNH) in Dar es Salaam, Tanzania was a unique and life changing experience."
A study written by first author Dr. Veronica Bruno, currently on faculty at the University of Calgary, "Yield of brain MRI in clinically diagnosed epilepsy in the Kingdom of Bhutan: A prospective study" is available for free download for a limited time.
Human immunodeficiency virus (HIV) infection has been shown to increase both ischemic and hemorrhagic stroke risks, but there are limited data on the safety and outcomes of intravenous thrombolysis with tPA (tissue-type plasminogen activator) for acute ischemic stroke in HIV-infected patients. This study takes a closer look.
Thank you to my patients, friends, and family for raising nearly $10,000 USD for multiple sclerosis research at the Tour de South Shore in September. This was a charity walk/run and athletics festival for neurological research with additional support from the McCourt Foundation. Go Team!
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
Sara Grundy, BAProject Manager, Massachusetts General Hospital, Boston, MA, USA
Lhab Tshering, BScResearch Coordinator, Jigme Dorji Wangchuck National Referral Hospital, Thimphu, Bhutan
Gladia Hotan, PhD candidateNeuroscience, Massachusetts Institute of Technology, Cambridge, MA, USA
Maggie Cochran, BSc Harvard Medical School, Cambridge, MA, USA
Joe Cohen, BScChief EEG Technician, Massachusetts General Hospital, Boston, MA, USA
Katie Holroyd, MDClinical Fellow in MedicineBrigham and Women's Hospital, Boston, MA, USA
Robert Regenhardt, MD, PhDNeurology Resident, Massachusetts General Hospital, Boston, MA, USA
Minnie Jang, AB CandidateHarvard College, Cambridge, MA, USA
Fode Abass CisseAssociate Professor, Neurology, Ignace Deen Teaching HospitalConakry, Republic of Guinea
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
Sonam Deki, BCommResearch Coordinator, Jigme Dorji Wangchuck National Referral Hospital, Thimphu, Bhutan
Megan Diamond, SM 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
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
We are recruiting individuals with multiple sclerosis to help identify markers for the disease in the blood to make diagnosis easier. Participation includes a one-time blood draw and a short survey. Visits can be scheduled around infusions or other medical appointments at Massachusetts General Hospital.
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:
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:
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 and the Harvard University Asia Center.
Resources for the Smartphone EEG project:
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.
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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