Gretchen L Birbeck

University of Rochester, Rochester, New York, United States

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Publications (152)1360.55 Total impact

  • Epilepsia 04/2015; 56(4):659-662. DOI:10.1111/epi.12929 · 4.58 Impact Factor
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    ABSTRACT: Case fatality rates among African children with cerebral malaria remain in the range of 15 to 25%. The key pathogenetic processes and causes of death are unknown, but a combination of clinical observations and pathological findings suggests that increased brain volume leading to raised intracranial pressure may play a role. Magnetic resonance imaging (MRI) became available in Malawi in 2009, and we used it to investigate the role of brain swelling in the pathogenesis of fatal cerebral malaria in African children. We enrolled children who met a stringent definition of cerebral malaria (one that included the presence of retinopathy), characterized them in detail clinically, and obtained MRI scans on admission and daily thereafter while coma persisted. Of 348 children admitted with cerebral malaria (as defined by the World Health Organization), 168 met the inclusion criteria, underwent all investigations, and were included in the analysis. A total of 25 children (15%) died, 21 of whom (84%) had evidence of severe brain swelling on MRI at admission. In contrast, evidence of severe brain swelling was seen on MRI in 39 of 143 survivors (27%). Serial MRI scans showed evidence of decreasing brain volume in the survivors who had had brain swelling initially. Increased brain volume was seen in children who died from cerebral malaria but was uncommon in those who did not die from the disease, a finding that suggests that raised intracranial pressure may contribute to a fatal outcome. The natural history indicates that increased intracranial pressure is transient in survivors. (Funded by the National Institutes of Health and Wellcome Trust U.K.).
    New England Journal of Medicine 03/2015; 372(12):1126-37. DOI:10.1056/NEJMoa1400116 · 54.42 Impact Factor
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    ABSTRACT: To describe acute EEG findings in HIV-infected adults with new-onset seizure, assess baseline clinical characteristics associated with EEG abnormalities, and evaluate the relationship between EEG abnormalities and recurrent seizure. Eighty-one HIV-infected adults with new-onset seizure had EEG recordings during their index admission. Baseline characteristics assessed included HIV stage, seizure semiology, serum and CSF studies, neuroimaging, cognitive function based on the Zambian Mini-Mental State Examination and International HIV Dementia Scale, and psychiatric symptoms using the Shona Symptom Questionnaire. We evaluated the relationship between baseline characteristics and EEG abnormalities. Patients were followed for seizure recurrence, and the association between acute EEG abnormalities and seizure recurrence was assessed. Death was a secondary outcome. Fifty-five patients had abnormal EEGs (68%): 18 (22%) had interictal spikes (12) or a recorded seizure (6). Among baseline clinical characteristics, more advanced HIV disease (p = 0.039) and any imaging abnormality (p = 0.027) were associated with abnormal EEGs. Cortical (p = 0.008) and white matter (p = 0.004) abnormalities were associated with slow posterior dominant rhythm. Patients were followed for a median of 303 days (interquartile range 103-560). Twenty-four (30%) died and 23 (28%) had recurrent seizures. EEG abnormalities were not associated with recurrent seizure. There was a nonsignificant association between seizures recorded during EEG and death (67% vs 26%, p = 0.051). EEG abnormalities are common in this population, particularly in patients with imaging abnormalities and advanced HIV. Acute EEG abnormalities were not associated with recurrent seizure, but high mortality rates during follow-up limited this analysis. © 2015 American Academy of Neurology.
    Neurology 03/2015; DOI:10.1212/WNL.0000000000001411 · 8.30 Impact Factor
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    ABSTRACT: Epilepsy-associated stigma is an important patient-centered outcome, yet quantification remains challenging. Jacoby's 3-item Stigma Scale is commonly used to assess felt stigma among people with epilepsy (PWE) yet has ceiling effects. The Stigma Scale of Epilepsy (SSE) is a 24-item instrument that measures felt stigma among PWE and stigmatizing attitudes among others. If cross-culturally valid, the SSE may elucidate stigma determinants and provide an outcome measure for interventions. We assessed the properties of the SSE in 102 Zambian PWE using exploratory and confirmatory item response theories and compared the latent traits assessed by the SSE to those assessed by Jacoby's Stigma Scale. Differential item functioning based on forced disclosure of epilepsy was examined. The SSE yielded two latent traits-the first reflected difficulties faced by PWE; the second reflected emotions associated with epilepsy. Jacoby's Stigma Scale was associated only with the first latent trait. Forced disclosure was associated with "worry" and "pity" that were associated with the second latent trait. In Zambian PWE, the SSE captured two latent traits. One trait represents feelings associated with epilepsy, which is theorized as a substantial yet unmeasured part of stigma. The SSE performs well across cultures and may more comprehensively assess felt stigma than other instruments. Further validation is required to determine whether the SSE adequately assesses stigmatizing attitudes among people without epilepsy.
    Quality of Life Research 11/2014; DOI:10.1007/s11136-014-0868-4 · 2.86 Impact Factor
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    ABSTRACT: In HIV-positive individuals with first seizure, we describe neuroimaging findings, detail clinical and demographic risk factors for imaging abnormalities, and evaluate the relationship between imaging abnormalities and seizure recurrence to determine if imaging abnormalities predict recurrent seizures. Among 43 participants (mean 37.4 years, 56% were male), 16 (37%) were on antiretroviral drugs, 32 (79%) had advanced HIV disease, and (28) 66% had multiple seizures and/or status epilepticus at enrollment. Among those with cerebrospinal fluid studies, 14/31 (44%) had opportunistic infections (OIs). During follow-up, 9 (21%) died and 15 (35%) experienced recurrent seizures. Edema was associated with OIs (odds ratio: 8.79; confidence interval: 1.03-236) and subcortical atrophy with poorer scores on the International HIV Dementia Scale) (5.2 vs. 9.3; P=0.002). Imaging abnormalities were not associated with seizure recurrence or death (P>0.05). Seizure recurrence occurred in at least a third and over 20% died during follow-up. Imaging was not predictive of recurrent seizure or death, but imaging abnormalities may offer additional diagnostic insights in terms of OI risk and cognitive impairment.
    Neurology International 10/2014; 6(4):5547. DOI:10.4081/ni.2014.5547
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    ABSTRACT: A prospective cohort study of new-onset seizure in people with human immunodeficiency virus (HIV) in Zambia is ongoing to determine the incidence of subsequent epilepsy and risk factors for epileptogenesis in this population. At enrollment, we evaluated this cohort for cognitive impairment and psychiatric morbidity. Over 50% of participants had cognitive impairment and significant psychiatric morbidity. Most participants had advanced HIV disease based on CD4+ T-cell count and World Health Organization stage, but we found no association between cognitive impairment or psychiatric morbidity and HIV disease staging.
    The American journal of tropical medicine and hygiene 10/2014; DOI:10.4269/ajtmh.13-0758 · 2.74 Impact Factor
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    ABSTRACT: Our goals were to understand the brain magnetic resonance imaging (MRI) findings in children with retinopathy-negative cerebral malaria (CM) and investigate whether any findings on acute MRI were associated with adverse outcomes. We performed MRI scans on children admitted to the hospital in Blantyre, Malawi with clinically defined CM. Two hundred and seventeen children were imaged during the study period; 44 patients were malarial retinopathy-negative; and 173 patients were retinopathy-positive. We compared MRI findings in children with retinopathy-negative and retinopathy-positive CM. In children who were retinopathy-negative, we identified MRI variables that were associated with death and adverse neurologic outcomes. On multivariate analysis, cortical diffusion weighted imaging (DWI) abnormality and increased brain volume were strongly associated with neurologic morbidity in survivors. Investigations to explore the underlying pathophysiologic processes responsible for these MRI changes are warranted.
    The American journal of tropical medicine and hygiene 09/2014; 91(5). DOI:10.4269/ajtmh.14-0216 · 2.74 Impact Factor
  • Melissa A Elafros, Esther Bui, Gretchen L Birbeck
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    ABSTRACT: Phenobarbital remains one of the most widely used antiepileptic drugs worldwide, yet there are limited data regarding side effects associated with its use in routine clinical care settings in low-income countries. Available data suggests that phenobarbital is as effective as other first-line drugs for treating tonic-clonic seizures, but side effect reports differ widely between high and low-income settings. A better understanding of phenobarbital side effect profile and severity in low-income settings is warranted given its role in efforts to decrease the epilepsy treatment gap. We used the Liverpool adverse events profile (LEAP) to assess side effects in consecutive patients with epilepsy on phenobarbital seeking care in rural Zambia. Data regarding age, gender, medication dose, and medication adherence were also collected. T-tests and Spearman's correlation coefficient were used to assess predictors of LEAP score and medication adherence. Thirty-five patients receiving a mean dose of 2.1mg/kg/day (SD: 2.78mg/kg/day) of phenobarbital were assessed. All participants reported at least one side effect in the previous four weeks with a median of 6 symptoms (IQR: 4-8) and a mean side effects score of 28/76 (SD: 5.38). Over half reported sleepiness and dizziness. Memory problems and depression were also common (both 46%). Total LAEP score was not associated with age (p=0.88), gender (p=0.17), or phenobarbital dose (p=0.13). Medication adherence was not associated with side effects total score (p=0.56). Rural Zambian adults taking phenobarbital at doses recommended by the World Health Organization report a significant number of side effects. The most common side effects reported were similar to those reported in high-income countries. The significant burden of phenobarbital-associated side effects in this African cohort is in contrast to data from non-randomized clinical trials in China that reported phenobarbital to be well-tolerated with few side effects. Additional investigations regarding phenobarbital side effects during routine care in low income settings is warranted.
    Epilepsy Research 08/2014; 108(9). DOI:10.1016/j.eplepsyres.2014.08.005 · 2.19 Impact Factor
  • Jo M. Wilmshurst, Gretchen L. Birbeck, Charles R. Newton
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    ABSTRACT: The incidence and prevalence of active epilepsy are greatest in Africa compared to all other continents, even those with equivalent poor settings. This is a reflection of the high levels of structural and metabolic causes and may reflect an increased risk in parts of the continent. The full burden of epilepsy, which includes the social and medical morbidity of the disorder and where people with epilepsy are heavily stigmatized and frequently untreated, cannot be fully assessed even using the disability adjusted life-years, since the assigned disability weights are not specific to these regions. The burden is further exacerbated by social, geographic, and economic barriers to care and the inability of African health systems to manage people with epilepsy effectively because of lack of trained personnel, limited facilities, and poor access to effective or sustained supplies of antiepileptic drugs, or even therapy at all. The situation is compounded by a probable underestimation of the prevalence and incidence of people with epilepsy related to the major stigma associated with the condition in Africa, and the limited training available to most health care workers who are the primary point of assessing most people with epilepsy. Finding innovative ways to address the huge barriers faced by people with epilepsy in Africa needs to be a major goal for the millennium.A PowerPoint slide summarizing this article is available for download in the Supporting Information section here.
    Epilepsia 07/2014; 55(9). DOI:10.1111/epi.12602 · 4.58 Impact Factor
  • Gretchen L Birbeck
    Annals of Neurology 06/2014; DOI:10.1002/ana.24197 · 11.91 Impact Factor
  • Kirsten M Fiest, Gretchen L Birbeck, Ann Jacoby, Nathalie Jette
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    ABSTRACT: Stigma remains a weight those with epilepsy have to carry and a defining feature of their identity. This article highlights recent studies published in the area of stigma, knowledge, attitudes, and practices regarding epilepsy. First, recent studies addressing the frequency of stigma and factors associated with stigma are discussed. Second, tools developed to ascertain stigma in epilepsy, or knowledge, attitudes, and practices, are examined. Lastly, we discuss interventions recently studied to reduce stigma in epilepsy.
    Current Neurology and Neuroscience Reports 05/2014; 14(5):444. DOI:10.1007/s11910-014-0444-x · 3.67 Impact Factor
  • Gretchen L Birbeck, Michael G Hanna, Robert C Griggs
    JAMA The Journal of the American Medical Association 04/2014; 311(16):1609-10. DOI:10.1001/jama.2014.2744 · 30.39 Impact Factor
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    ABSTRACT: The global burden of headache is very large, but knowledge of it is far from complete and needs still to be gathered. Published population-based studies have used variable methodology, which has influenced findings and made comparisons difficult. Among the initiatives of the Global Campaign against Headache to improve and standardize methods in use for cross-sectional studies, the most important is the production of consensus-based methodological guidelines. This report describes the development of detailed principles and recommendations. For this purpose we brought together an expert consensus group to include experience and competence in headache epidemiology and/or epidemiology in general and drawn from all six WHO world regions. The recommendations presented are for anyone, of whatever background, with interests in designing, performing, understanding or assessing studies that measure or describe the burden of headache in populations. While aimed principally at researchers whose main interests are in the field of headache, they should also be useful, at least in parts, to those who are expert in public health or epidemiology and wish to extend their interest into the field of headache disorders. Most of all, these recommendations seek to encourage collaborations between specialists in headache disorders and epidemiologists. The focus is on migraine, tension-type headache and medication-overuse headache, but they are not intended to be exclusive to these. The burdens arising from secondary headaches are, in the majority of cases, more correctly attributed to the underlying disorders. Nevertheless, the principles outlined here are relevant for epidemiological studies on secondary headaches, provided that adequate definitions can be not only given but also applied in questionnaires or other survey instruments.
    The Journal of Headache and Pain 01/2014; 15(1):5. DOI:10.1186/1129-2377-15-5 · 3.28 Impact Factor
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    ABSTRACT: The global burden of headache is very large, but knowledge of it is far from complete and needs still to be gathered. Published population-based studies have used variable methodology, which has influenced findings and made comparisons difficult. The Global Campaign against Headache is undertaking initiatives to improve and standardize methods in use for cross-sectional studies. One requirement is for a survey instrument with proven cross-cultural validity. This report describes the development of such an instrument. Two of the authors developed the initial version, which was used with adaptations in population-based studies in China, Ethiopia, India, Nepal, Pakistan, Russia, Saudi Arabia, Zambia and 10 countries in the European Union. The resultant evolution of this instrument was reviewed by an expert consensus group drawn from all world regions. The final output was the Headache-Attributed Restriction, Disability, Social Handicap and Impaired Participation (HARDSHIP) questionnaire, designed for application by trained lay interviewers. HARDSHIP is a modular instrument incorporating demographic enquiry, diagnostic questions based on ICHD-3 beta criteria, and enquiries into each of the following as components of headache-attributed burden: symptom burden; health-care utilization; disability and productive time losses; impact on education, career and earnings; perception of control; interictal burden; overall individual burden; effects on relationships and family dynamics; effects on others, including household partner and children; quality of life; wellbeing; obesity as a comorbidity. HARDSHIP already has demonstrated validity and acceptability in multiple languages and cultures. Modules may be included or not, and others (eg, on additional comorbidities) added, according to the purpose of the study and resources (especially time) available.
    The Journal of Headache and Pain 01/2014; 15(1):3. DOI:10.1186/1129-2377-15-3 · 3.28 Impact Factor
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    ABSTRACT: Reliable and timely information on the leading causes of death in populations, and how these are changing, is a crucial input into health policy debates. In the Global Burden of Diseases, Injuries, and Risk Factors Study 2010 (GBD 2010), we aimed to estimate annual deaths for the world and 21 regions between 1980 and 2010 for 235 causes, with uncertainty intervals (UIs), separately by age and sex. We attempted to identify all available data on causes of death for 187 countries from 1980 to 2010 from vital registration, verbal autopsy, mortality surveillance, censuses, surveys, hospitals, police records, and mortuaries. We assessed data quality for completeness, diagnostic accuracy, missing data, stochastic variations, and probable causes of death. We applied six different modelling strategies to estimate cause-specific mortality trends depending on the strength of the data. For 133 causes and three special aggregates we used the Cause of Death Ensemble model (CODEm) approach, which uses four families of statistical models testing a large set of different models using different permutations of covariates. Model ensembles were developed from these component models. We assessed model performance with rigorous out-of-sample testing of prediction error and the validity of 95% UIs. For 13 causes with low observed numbers of deaths, we developed negative binomial models with plausible covariates. For 27 causes for which death is rare, we modelled the higher level cause in the cause hierarchy of the GBD 2010 and then allocated deaths across component causes proportionately, estimated from all available data in the database. For selected causes (African trypanosomiasis, congenital syphilis, whooping cough, measles, typhoid and parathyroid, leishmaniasis, acute hepatitis E, and HIV/AIDS), we used natural history models based on information on incidence, prevalence, and case-fatality. We separately estimated cause fractions by aetiology for diarrhoea, lower respiratory infections, and meningitis, as well as disaggregations by subcause for chronic kidney disease, maternal disorders, cirrhosis, and liver cancer. For deaths due to collective violence and natural disasters, we used mortality shock regressions. For every cause, we estimated 95% UIs that captured both parameter estimation uncertainty and uncertainty due to model specification where CODEm was used. We constrained cause-specific fractions within every age-sex group to sum to total mortality based on draws from the uncertainty distributions. In 2010, there were 52·8 million deaths globally. At the most aggregate level, communicable, maternal, neonatal, and nutritional causes were 24·9% of deaths worldwide in 2010, down from 15·9 million (34·1%) of 46·5 million in 1990. This decrease was largely due to decreases in mortality from diarrhoeal disease (from 2·5 to 1·4 million), lower respiratory infections (from 3·4 to 2·8 million), neonatal disorders (from 3·1 to 2·2 million), measles (from 0·63 to 0·13 million), and tetanus (from 0·27 to 0·06 million). Deaths from HIV/AIDS increased from 0·30 million in 1990 to 1·5 million in 2010, reaching a peak of 1·7 million in 2006. Malaria mortality also rose by an estimated 19·9% since 1990 to 1·17 million deaths in 2010. Tuberculosis killed 1·2 million people in 2010. Deaths from non-communicable diseases rose by just under 8 million between 1990 and 2010, accounting for two of every three deaths (34·5 million) worldwide by 2010. 8 million people died from cancer in 2010, 38% more than two decades ago; of these, 1·5 million (19%) were from trachea, bronchus, and lung cancer. Ischaemic heart disease and stroke collectively killed 12·9 million people in 2010, or one in four deaths worldwide, compared with one in five in 1990; 1·3 million deaths were due to diabetes, twice as many as in 1990. The fraction of global deaths due to injuries (5·1 million deaths) was marginally higher in 2010 (9·6%) compared with two decades earlier (8·8%). This was driven by a 46% rise in deaths worldwide due to road traffic accidents (1·3 million in 2010) and a rise in deaths from falls. Ischaemic heart disease, stroke, chronic obstructive pulmonary disease (COPD), lower respiratory infections, lung cancer, and HIV/AIDS were the leading causes of death in 2010. Ischaemic heart disease, lower respiratory infections, stroke, diarrhoeal disease, malaria, and HIV/AIDS were the leading causes of years of life lost due to premature mortality (YLLs) in 2010, similar to what was estimated for 1990, except for HIV/AIDS and preterm birth complications. YLLs from lower respiratory infections and diarrhoea decreased by 45-54% since 1990; ischaemic heart disease and stroke YLLs increased by 17-28%. Regional variations in leading causes of death were substantial. Communicable, maternal, neonatal, and nutritional causes still accounted for 76% of premature mortality in sub-Saharan Africa in 2010. Age standardised death rates from some key disorders rose (HIV/AIDS, Alzheimer's disease, diabetes mellitus, and chronic kidney disease in particular), but for most diseases, death rates fell in the past two decades; including major vascular diseases, COPD, most forms of cancer, liver cirrhosis, and maternal disorders. For other conditions, notably malaria, prostate cancer, and injuries, little change was noted. Population growth, increased average age of the world's population, and largely decreasing age-specific, sex-specific, and cause-specific death rates combine to drive a broad shift from communicable, maternal, neonatal, and nutritional causes towards non-communicable diseases. Nevertheless, communicable, maternal, neonatal, and nutritional causes remain the dominant causes of YLLs in sub-Saharan Africa. Overlaid on this general pattern of the epidemiological transition, marked regional variation exists in many causes, such as interpersonal violence, suicide, liver cancer, diabetes, cirrhosis, Chagas disease, African trypanosomiasis, melanoma, and others. Regional heterogeneity highlights the importance of sound epidemiological assessments of the causes of death on a regular basis. Bill & Melinda Gates Foundation.
    The Lancet 12/2013; 380(9859):2095-128. DOI:10.1016/S0140-6736(12)61728-0 · 39.21 Impact Factor
  • Ralph F Józefowicz, Gretchen L Birbeck
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    ABSTRACT: Neurology is becoming increasingly global, including practice, research, and education. Indeed, more than a third of attendees at the American Academy of Neurology (AAN) annual meeting come from abroad (personal communication, AAN, September 10, 2013), and in 2012, approximately 64% of all manuscripts submitted to Neurology® came from outside the United States (personal communication, Kathy Pieper, September 9, 2013). There is a growing interest in global health electives by US and Canadian medical students and residents, who are increasingly seeking opportunities for international electives. In this issue of Neurology, Lyons et al.(1) report the results of a survey to assess opportunities for global health electives in neurology residency training programs conducted by the AAN Graduate Education Subcommittee and the Member Research Subcommittee, and found that such electives are few, occurring in just over half of the responding programs; lack of funding appears to be the major obstacle in setting up such electives. Although only 61% of neurology program directors completed the survey, which may have skewed the results, 3 major themes emerged from the comments posed by the survey respondents.
    Neurology 12/2013; 82(2). DOI:10.1212/WNL.0000000000000024 · 8.30 Impact Factor
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    ABSTRACT: Epilepsy-associated stigma contributes substantially to the social, medical, and economic burden of disease for people with epilepsy (PWE), but little is known about its impact on caregivers of PWE. To better understand stigma experienced by caregivers of PWE, factors that influence caregiver stigma, and the effect of stigma on a caregiver's psychologic well being, we interviewed 100 caregivers of children with epilepsy in Zambia. Questions assessed maternal knowledge, attitudes, and practices related to epilepsy, maternal stigma, mother's proxy report of child stigma, and maternal psychiatric morbidity. Of 100 mothers, 39 (39%) indicated that their child was stigmatized because of his or her epilepsy. Maternal proxy report of child stigma was highly correlated with maternal stigma (OR: 5.4, p=0.04), seizure frequency (p=0.03) and seizure severity (p=0.01). One in five of 100 mothers (20%) reported feeling stigmatized because of their child's epilepsy. Higher maternal stigma was associated with lower familial and community support (ORs: 65.2 and 34.7, respectively; both p<0.0001) as well as higher psychiatric morbidity (OR: 1.2; p=0.002). Formal education and epilepsy knowledge were associated with decreased maternal stigma (ORs: 0.8 and 0.7, respectively; both p<0.001). One in five mothers of PWE feel stigmatized because of their child's epilepsy. As maternal stigma is associated with psychiatric morbidity, educating caregivers about epilepsy and screening for anxiety and depression are warranted.
    International Health 11/2013; DOI:10.1093/inthealth/iht028 · 1.13 Impact Factor
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Publication Stats

4k Citations
1,360.55 Total Impact Points


  • 2013–2014
    • University of Rochester
      • Department of Neurology
      Rochester, New York, United States
    • University Center Rochester
      Рочестер, Minnesota, United States
    • The Queen Elizabeth Central Hospital in Blantyre
      Kapeni, Southern Region, Malawi
  • 2010–2013
    • University of Zambia
      • Department of Paediatrics and Child Health
      Lusaka, Lusaka, Zambia
    • Vassar College
      Poughkeepsie, New York, United States
  • 2002–2013
    • Michigan State University
      • • College of Human Medicine
      • • Department of Epidemiology
      East Lansing, Michigan, United States
  • 2012
    • Vanderbilt University
      • Department of Neurology
      Nashville, MI, United States
  • 2011
    • St. Olavs Hospital
      Nidaros, Sør-Trøndelag, Norway
  • 2010–2011
    • Norwegian University of Science and Technology
      • Department of Neuroscience (INM)
      Nidaros, Sør-Trøndelag, Norway
  • 2000
    • University of California, Los Angeles
      • Department of Medicine
      Los Angeles, CA, United States