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Global Neurology Research Group

The Global Neurology Research Group, part of the Department of Neurology and the Neurological Clinical Research Institute, finds innovative solutions to improve the quality of neurological care in low- and middle-income countries.

Overview

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.

Highlights

Group photo from team dinner in Guinea

A team photo from the Global Neurology Research Group's recent trip to Guinea.


Mateen symposium

2018 Regional RNDS

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.


Thanks to Sumaira Foundation

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.


First triMS.online conference a success

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


Radio Interview with Global Neurology Research Group

Listen to the Interview with Le Grand Direct Radio Espace


Group Featured on Radio Television Guinea

The Massachusetts General Hospital Global Neurology Research Group was featured on Radio Television Guinea in August 2018.

Support Mass General Neurology

Thanks for supporting Massachusetts General Hospital Neurology in a 5K organized by the New England-based McCourt Foundation. The McCourt Foundation is dedicated to building a community to assist those affected by neurological disorders using research and the power of giving, to enhance the lives of patients and their families. The McCourt Foundation will be matching proceeds raised by each MGH Neurology team member — meaning 100% of funds raised plus the McCourt match, will directly benefit neurology research at Mass General.


Impact of Poorly Controlled Epilepsy in the Republic of Guinea

A new paper from the Global Neurology Research Group in the journal Seizure finds there is an urgent need to improve the standard of care for people with epilepsy in Guinea. Several missed opportunities were identified, including low use of AEDs and high use of traditional medicines, particularly in children. Targeted programs should be developed to prevent unintentional injury and improve seizure control.


Mateeen Pierre Foundation award

Mateen wins Global Observatory eHealth award

Dr. Mateen has received a 2018 Global Observatory eHealth Award from the Pierre Fabre Foundation. She was recognized for the Guinea Epilepsy Project, of which she is the principal investigator, along with the Guinean-Mass General team.

The awards are designed to identify, document, promote and help develop eHealth initiatives that improve access to quality healthcare and medicines for the most disadvantaged populations in resource-limited countries. It stands as the leading resource and gateway for development of eHealth in the Global South.


Thank you to our funders

The Global Neurology Research Group would like to thank our funding partners for helping to make our research possible.


Group Travels to West Africa to Consult with Epilepsy Patients

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.

Group Members

Principal Investigator

Farrah Mateen, MD, PhD

Farrah Mateen, MD, PhD
Associate Professor of Neurology,
Harvard Medical School, Boston, MA, USA


Research Staff

Aissatou Kenda Bah

Aissatou Kenda Bah, MD
Project Manager,
Ignace Deen Teaching Hospital
Conakry, Republic of Guinea

Abdoul Bashir Djibo Hamani

Abdoul Bashir Djibo Hamani, MD
Project Manager,
Ignace Deen Teaching Hospital
Conakry, Republic of Guinea

Lhab Tshering, BSc

Lhab Tshering, BSc
Research Coordinator, Jigme Dorji Wangchuck National Referral Hospital, Thimphu, Bhutan


Andre Vogel

Andre Vogel, BA
Clinical Research Coordinator,
Massachusetts General Hospital, Boston, MA, USA



Graduate Students

Gladia Hotan

Gladia Hotan, PhD candidate
Neuroscience, Massachusetts Institute of Technology, Cambridge, MA, USA


Mike Shaekermann

Mike Schaekermann, PhD candidate
Computer Science, University of Waterloo
Waterloo, ON, Canada


Medical Students

Whitney Fitts, BA

Whitney Fitts, BA
Harvard Medical School, Boston, MA, USA


 


Interns

Andrew Siyoon Ham

Andrew Siyoon Ham
Harvard College, class of 2022
A.B. candidate in Neuroscience
Secondary in Global Health and Health Policy


Dylan Rice

Dylan Rice
Harvard College, class of 2020
A.B. candidate in Cognitive Neuroscience and Evolutionary Psychology
Secondary in Global Health and Health Policy


 EEG Technicians

 

Joe Cohen

Joe Cohen, BSc
Chief EEG Technician,
Massachusetts General Hospital, Boston, MA, USA



Residents/Fellows

Pria Anand

Pria Anand, MD
Advanced General and Autoimmune Neurology Fellow
Massachusetts General Hospital, Boston, MA, USA


Katie Holroyd

Katie Holroyd, MD
Clinical Fellow in Medicine
Brigham and Women's Hospital, Boston, MA, USA


Robert Regenhardt

Robert Regenhardt, MD, PhD
Neurology Resident,
Massachusetts General Hospital, Boston, MA, USA


 

Michael Stanley, MD

Michael P.H. Stanley, MD
Neurology Resident,
Partners HealthCare/Harvard Medical School,
Boston, MA, USA


 

Jennifer Williams

Jennifer Williams, MD, MRCPI
Epilepsy Fellow,
Massachusetts General Hospital, Boston, MA, USA



Collaborators

 

Fode Abass Cisse

Fode Abass Cisse
Associate Professor, Neurology,
Ignace Deen Teaching Hospital
Conakry, Republic of Guinea


Nana Rahamatou Tassiou

Nana Rahamatou Tassiou (Niger)
Neurology Resident,
Ignace Deen Teaching Hospital
Conakry, Republic of Guinea


Foksuna Sadaki

Foksouna Sakadi (Chad)
Neurology Resident,
Ignance Deen Teaching Hospital
Conakry, Republic of Guinea



Alumni

Mahmoud AbdelRazek, MD
Neurology Fellow, Massachusetts General Hospital, Boston, MA, US

Kate Brizzi, MD
Advanced General Neurology Fellow, Massachusetts General Hospital, Boston, MA, USA

Veronica Bruno, MD
MPH student, Harvard T.H. Chan School of Public Health, Boston, MA, USA

Sarah Clark, BSc
Project Manager, Massachusetts General Hospital, Boston, MA, US

Maggie Cochran, BSc
Harvard Medical School, Boston, MA, USA

Sonam Deki, BComm
Research Coordinator, Jigme Dorji Wangchuck National Referral Hospital, Thimphu, Bhutan

Megan Diamond, SM
Massachusetts General Hospital, Boston, MA, USA

Sara Grundy, BA
Project Manager, Massachusetts General Hospital, Boston, MA, USA

Melissa Houghton
Summer Intern, Duke University, Undergraduate Student

Aline Herlopian, MD
Clinical 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 Candidate
Harvard College, Cambridge, MA, USA

Diederik Koelman, BSc
Master'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, MD
Advanced General and Autoimmune Neurology Fellow, Massachusetts General Hospital, Boston, MA, USA

Jo Mantia
EEG Technician, Sunnybrook Hospital, Toronto, Canada

Erica McKenzie, BSc
Medical Student, Queen's University, Ontario, Canada

Bryan Patenaude, MA
PhD Candidate, Harvard T.H. Chan School of Public Health, Boston, MA, USA

Altaf Saadi, MD
Neurology Resident, Brigham and Women's Hospital & Massachusetts General Hospital, Boston, MA, USA

Lance Shaull, BA
Associate 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, BA
Medical Student, Tufts University School of Medicine, Boston, MA, USA

Stanley Wanjala, MA
Sagam Community Hospital, Sagam, Kenya

Leah Wibecan, MD, MPH
Pediatric Neurology Resident, Massachusetts General Hospital, Boston, MA, USA

Emma Wolper, BA
Research Assistant, Lesley University, Cambridge, MA, USA

Brian Wong, MD
Pediatric 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 Zhao
High School Student, Boston Latin School, Boston, MA, USA



Global Neurology Staff Working in Bhutan

Damber and Farrah Erica and Tali
Dr. Damber Nirola and Dr. Farrah Mateen Erica McKenzie and Tali Sorets enrolling patients.
Sonam and Lhab Jo in the clinic
Research coordinators Sonam and Lhab in Thimphu, Bhutan. EEG Technician Jo Mantia performs a stationary EEG in the clinic in Bhutan. 

Research Projects

A Global Atlas of NMO Diagnosis and Treatment Practices

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).

Sponsors


Platelet Signatures in Multiple Sclerosis

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


Light Therapy for Fatigue in 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:


MAMBO: Treating Post-Stroke Disability in Tanzania with Fuoxetine

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.


Smartphone EEG in Bhutan and Guinea

Testing the EEG system 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, 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:


Previous Research Projects:

  • Post-Stroke Disability, Mortality and Depression in Tanzania
  • Optical Coherence Tomography to Assess Infant Brain Development in Sub-Saharan Africa and Central Asia

Educational Resources

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.

2018 Epilepsy Survey

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.


Women's Health and Epilepsy Survey: Bhutan Epilepsy Project

Download a PDF version of the women's health and epilepsy survey.


The Curse, Bhutan Epilepsy Project

 

Please see our short feature documentary on epilepsy in Bhutan, which received the 2015 American Academy of Neurology Film Festival Award.


World Maps

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.

Download by Language

Arabic

Publications

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.

In the News

More Highlights

Patenaude Defends Doctoral Work

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.


Special Event: Medical Care Under Siege

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


Study Investigating Light Therapy as a Treatment for Multiple Sclerosis

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


Study Suggests a Significant Amount of Epilespy in Bhutan is Preventable and Treatable

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.


Big Brain Projects Urged to Aid Public Health

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."


Global Neurology Group Joins African Health and Aging Study

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.


Mateen Seeks Creative Solutions for Global Neurology Challenges

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.

Funding Partners

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