Two new approaches to silence the SOD1 gene that causes ALS were announced today, signaling the beginning of personalized medicine in ALS. Healey Center investigators were instrumental in both studies.
Global Neurology Research Group
Global Neurology Research Group
165 Cambridge Street
Boston, MA 02114
Explore This Lab
The Global Neurology Research Group is dedicated to finding practical, research-backed, 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 both physically and mentally disabling, and are associated with a high human and economic cost.
The Global Neurology Research Group believes that global health interventions should be designed and validated for the populations that will most benefit from their use. The Group's research aims to improves neurological health for all patients globally, regardless of wealth or status.
Guinea Epilepsy Project receives Pierre Fabre Foundation's 2020 Global South eHealth Observatory awardDr. Mateen and her colleague Professor Abass Cisse Fode were recently announced as 2020 laureates of the Pierre Fabre Foundation's Global South eHealth Observatory for their work on neurological digital health on behalf of the Guinea Epilepsy Project Team. This honor is awarded for projects that expand eHealth in the global South and demonstrate potential to improve access to healthcare and reduce inequalities in healthcare for the most vulnerable populations in low-income countries. The first phase of this project focused on developing a technological solution for brain recordings used in the diagnosis and treatment of people with epilepsy and the newest phase will integrate artificial intelligence to make the tool more effective and complete, helping to compensate for Guinea's lack of epilepsy specialists. Find out more about the Guinea Epilepsy Project's award in detail here.
Detailing the Impact of COVID-19 on Patients with Multiple Sclerosis
Dr. Mateen recently joined the RealTalk MS podcast to discuss the results of a survey she conducted in partnership with IConquerMS about the impact of COVID-19 on MS patients. The survey captured information from 1,000 patients. While only seven individuals had tested positive for COVID-19, the impact of the pandemic on clinical care has been considerable: 64% of patients reported postponing or canceling visits with a neurologist and 10 percent have made changes to a disease modifying therapy dose or schedule–some without consulting their neurologist. Listen to the podcast. (Dr. Mateen's segment begins at 10:08)
Review on Cancer in Syrian Refugees in Jordan and Lebanon between 2015 and 2017Dr. Mateen is the co-author of a new paper in The Lancet Oncology. "Protracted conflicts in the Middle East have led to successive waves of refugees crossing borders. Chronic, non-communicable diseases are now recognised as diseases that need to be addressed in such crises. Cancer, in particular, with its costly, multidisciplinary care, poses considerable financial and ethical challenges for policy makers."
Advocating for Continuity of Multiple Sclerosis Care
On March 10th, Dr. Farrah Mateen traveled to the MA State House to advocate on behalf of patients with Multiple Sclerosis in Massachusetts. In conjunction with advocates from the National Multiple Sclerosis Society, Dr. Mateen spoke in support of HB3556/SB606. The bill will allow MS patients to maintain the treatment regimen that works best for them, even if their insurance company unexpectedly alters coverage.
CMMB Medical Donations for Epilepsy Care and Research in Partnership with the Global Neurology Research Group and Ignace Dean Hospital
The Global Neurology Research Group has partnered with the Ignace Deen Hospital in Conakry, Guinea, since 2017. Together, the two institutions have built a robust scientific relationship to improve diagnostic care for patients with epilepsy in Guinea. Under Dr. Farrah Mateen’s leadership, more than 500 patients have received free treatment as part of the Guinea Epilepsy Project. In October of 2019, CMMB, a medical charity, began supporting the Global Neurology Research Group’s efforts in Guinea via donated anti-epileptic medications.
Modeling a Drone Delivery Network for Delivery of Antiepileptic Drugs in the Republic of Guinea
The Global Neurology Research Group has published the results of its most recent study, probing the use of drone technology to delivery life-saving anti-epileptic drugs in Conakry, the capital city of Guinea. In collaboration with physicians and scientists in Guinea, Toronto, and Boston, researchers with the Global Neurology Research Group developed a mathematical model to simulate drone-based delivery of medications. They found that, in theory, drones could dramatically reduce the response time for both emergency and routine delivery of anti-epileptic drugs in Conakry.
Research Results Presented at International Conferences
Members of the Global Neurology Research Group traveled to Baltimore, MD, and West Palm Beach, FL, to present their research at the American Epilepsy Society (AES) annual conference and the Americas Committee for the Treatment and Research in Multiple Sclerosis (ACTRIMS) annual conference, respectively.
The results of the Group's modeling study of drone networks to deliver anti-epileptic drugs were presented at AES and the findings from the Group's 2-year clinical trial of light-therapy for the treatment of MS-associated fatigue at ACTRIMS. In recognition of the Group's work, Andre Vogel, study coordinator, was awarded a Young Investigator travel grant to fund his attendance at ACTRIMS.
Dr. Sakadi awarded Angela Vincent Young Investigator Award
Team member and Chadian Neurologist, Dr. Foksouna Sakadi, was awarded the Angela Vincent Young Investigator Award at the World Federation of Neurology’s annual conference in Dubai. He reported work conducted with the Global Neurology Group in the Republic of Guinea from 2017 through 2018.
Building Training Capacity in Muhimbili
Sue Fasoli, Occupational Therapist and Associate Professor at HMS, helps build capacity for the Fugl Meyer Motor Scale training with Notburga, Physical Therapist, and Kigocha Okeng'o, Neurologist, Muhimbili National Hospital.
MAMBO Project Presented at the NIH
Congratulations to Dr. Kigocha Okeng’o, who presented the MAMBO project to an audience of NIH-funded researchers at the National Library of Medicine in June, 2019!
Bhutan Epilepsy Video
Profile of Smartphone EEG Epilepsy Project (French language)
Meet the Team
Mahmoud AbdelRazek, MD
Pria Anand, MD
Kate Brizzi, MD
Veronica Bruno, MD
Sarah Clark, BSc
Maggie Cochran, BSc
Sonam Deki, BComm
Megan Diamond, SM
Whitney Fitts, BA
Sara Grundy, BA
Aline Herlopian, MD
Geetha Iyer, MBBS, SCM, PhD candidate
Minnie Jang, AB Candidate
Diederik Koelman, BSc
Alice Lam, MD
Natalie Cornay Manalo, MD
Erica McKenzie, BSc
Bryan Patenaude, MA
Robert Regenhardt, MD, PhD
Altaf Saadi, MD
Lance Shaull, BA
Michael P.H. Stanley, BA
Nana Rahamatou Tassiou
Stanley Wanjala, MA
Jennifer Williams, MD, MRCPI
Emma Wolper, BA
Brian Wong, MD
Janice Wong, MD
Rodrigo Zepeda, MD
MAMBO: Treating Post-Stroke Disability in Tanzania with Fluoxetine
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. We will also investigate post-stroke dementia in Tanzanian patients. Funded by the National Institutes of Health.
Electronic Pill Bottle Monitoring to Promote Medication Adherence in Multiple SclerosisKeeping track of whether you've taken your medications can be difficult, but in diseases like Multiple Sclerosis (MS) taking a medication regularly can have a great impact on the course of the disease. We are undertaking a study to determine if electronic pill bottles can help patients with MS remember to take their oral disease modifying therapies more regularly. We are currently recruiting adult MS patients of any age who take pills to manage their MS to be a part of this study.
Participation in this study will last 90 days and will require 2 study visits to MGH. Please contact Dylan Rice (firstname.lastname@example.org or 617-643-2947) if you are interested in participating.
VERISMO: An Observational Study of MS-Patients Treated with Ocrelizumab
Ocrelizumab has been shown to be an effective treatment option for patients with MS, but the FDA has requested that a study be undertaken to determine the long-term health effects of ocrelizumab.
This 10-year-long study will observe 4,000 patients in the US and Germany who have newly started ocrelizumab or another MS disease modifying therapy.
Participation in this observational study does not require any special visits to MGH; instead, the research team will follow participants through the electronic medical record for up to 5 years. If you are interested in participating, please contact Dylan Rice at email@example.com or (617) 643-2947.
Smartphone EEG in Bhutan and Guinea
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:
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:
A Global Atlas of NMO Diagnosis and Treatment Practices
Neuromyelitis optica (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 optica (NMO).
Platelet Signatures in Multiple Sclerosis
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.
The Global Neurology Research Group at Massachusetts General Hospital, 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.
Women's Health and Epilepsy Survey: Bhutan Epilepsy Project
See complete list of publications on PubMed.Mateen FJ, Leung KHB, Vogel AC, Cisse AF, Chan TCY A drone delivery network for antiepileptic drugs: A framework and modelling case study in a low-income country.
Transactions of The Royal Society of Tropical Medicine and Hygiene, trz131, https://doi.org/10.1093/trstmh/trz131
Ham AS, Nirola DK, Ayub N, Tshering L, Dem U, Jette N, Dorji C, Mateen FJ. Missed opportunities for epilepsy surgery referrals in Bhutan: A cohort study. Epilepsy Res. 2020 Jan;159:106252.
Vogel AC, Okeng'o K, Chiwanga F, Ismail SS, Buma D, Pothier L, Mateen FJ. MAMBO: Measuring ambulation, motor, and behavioral outcomes with post-stroke fluoxetine in Tanzania: Protocol of a phase II clinical trial. J Neurol Sci. 2020 Jan 15;408:116563.
Anand P, Hotan GC, Vogel A, Venna N, Mateen FJ. Progressive multifocal leukoencephalopathy: A 25-year retrospective cohort study. Neurol Neuroimmunol Neuroinflamm. 2019 Sep 25;6(6) ). pii: e618.
Mateen FJ. Multiple sclerosis in resource-limited settings: Research opportunities in an unequal world. Neurology. 2019 Jul 23;93(4):176-180.
Fitts W, Rahamatou NT, Abass CF, Vogel AC, Ghislain AH, Sakadi F, Hongxiang Q, Conde ML, Baldé AT, Hamani ABD, Bah AK, Anand P, Patenaude B, Mateen FJ. School status and its associations among children with epilepsy in the Republic of Guinea. Epilepsy Behav. 2019 Aug;97:275-281.
Williams JA, Cisse FA, Schaekermann M, Sakadi F, Tassiou NR, Hotan GC, Bah AK, Hamani ABD, Lim A, Leung ECW, Fantaneanu TA, Milligan TA, Khatri V, Hoch DB, Vyas MV, Lam AD, Cohen JM, Vogel AC, Law E, Mateen FJ; Guinea Epilepsy Project. Smartphone EEG and remote online interpretation for children with epilepsy in the Republic of Guinea: Quality, characteristics, and practice implications. Seizure. 2019 Oct;71:93-99.
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
The Global Neurology Research Group would like to thank our funding partners for helping to make our research possible.