A5076453083- Epilepsy research and treatment
- Pharmacological Effects and Toxicity Studies
- Cerebral Palsy and Movement Disorders
- Infant Development and Preterm Care
- Adolescent and Pediatric Healthcare
- Bacterial Infections and Vaccines
- Neonatal and fetal brain pathology
- Innovations in Medical Education
- Cellular transport and secretion
- Pharmaceutical studies and practices
- Migration, Health and Trauma
- Occupational Therapy Practice and Research
- Childhood Cancer Survivors' Quality of Life
- Lysosomal Storage Disorders Research
- EEG and Brain-Computer Interfaces
- Psychosomatic Disorders and Their Treatments
- Hereditary Neurological Disorders
- Family and Patient Care in Intensive Care Units
- Delphi Technique in Research
- Child and Adolescent Health
- Mental Health and Patient Involvement
- Child Abuse and Trauma
- Family and Disability Support Research
Boston Children's Hospital
2022-2025
Harvard University
2022-2025
Boston Children's Museum
2025
Centre Hospitalier Universitaire Sainte-Justine
2024
Mayo Clinic in Florida
2024
Aarhus University Hospital
2024
Washington University in St. Louis
2024
Université de Montréal
2024
Children's Hospital of Philadelphia
2024
Aarhus University
2024
In the United States, many child neurologists (CNs) and neurodevelopmental disability (NDD) specialists who read EEGs in clinical practice had no additional EEG training other than what was received during residency. This highlights importance of ensuring that CN/NDD residents achieve competence before graduation. However, prior survey-based evidence showed roughly a third graduating CN States do not feel confident interpreting independently. As part needs assessment, we conducted...
We read with great interest the report by Sourbron et al. 1 entitled "Medical Treatment in Infants and Young Children Epilepsy: Off-label Use of Antiseizure Medications.Survey Report ILAE Task Force Medical Therapies Children".We want to congratulate authors on this timely article that explores occurrence off-label anti-seizure medicine use.It analyzes prescription behavior over 500 neurologists worldwide six different epilepsy syndromes, including Infantile Epileptic Spasms Syndrome...
The Pediatric Epilepsy Research Consortium (PERC) Health Equity Special Interest Group (SIG) used Concept Mapping to begin developing Common Data Elements (CDE) about social determinants of health standardize data collection and facilitate robust evaluation disparities in pediatric epilepsy research. is a structured participatory mixed method suited for group consensus. PERC members (1) identified factors that are important measure research, (2) sorted into meaningful categories, (3) rated...
Abstract Objective This single‐center retrospective study examined the response to initial standard therapy in children with infantile epileptic spasms syndrome (IESS) associated surgically‐remediable lesion and evaluated risk factors for drug resistance. We assessed whether failure of first IESS predicted eventual Methods New‐onset lesions was included. Regression analysis performed identify Kaplan–Meier survival stratified by conducted explore if earlier recognition drug‐resistant epilepsy...
The aim of this study was to determine whether selection treatment for children with infantile spasms (IS) varies by race/ethnicity.The prospective US National Infantile Spasms Consortium database includes IS treated from 2012 2018. We examined the relationship between race/ethnicity and receipt standard therapy (prednisolone, adrenocorticotropic hormone, vigabatrin), adjusting demographic clinical variables using logistic regression. Our primary outcome course, which considered prescribed...
Non-Hispanic (NH) Black children are less likely to receive a standard treatment course for infantile epileptic spasms syndrome (IESS) than White/NH at pediatric tertiary care epilepsy centers in the United States. However, if inequities exist time diagnosis is unknown. Diagnostic delays as little 1 week can be associated with worse developmental outcomes.
Lead time to treatment (clinical onset of epileptic spasms [ES] initiation appropriate treatment) is known predict outcomes in infantile syndrome (IESS). Timing the clinical ES crucial establish lead time. We investigated how often could be established nearest week. aimed (1) ascertain exact date or estimate week and (2) compare clinical/demographic factors between patients where was determined estimated whose not Reasons for difficulties estimating were explored.
To share our experience diagnosing a patient with adult-onset GM2 Gangliosidosis secondary to Hexosaminidase A deficiency
We describe patient characteristics and response to initial treatment in a large case series of children presenting with infantile epileptic spasms syndrome tertiary-care hospital pediatric neurology service Bangladesh. The purpose the study was add growing body literature on low- middle-income countries.We enrolled 212 infants new-onset (IESS) at time presentation National Institute Neurosciences Hospital (NINS) Dhaka, Bangladesh, between January 2019 August 2021. collected data about...
Nearly 80 million people are estimated to have been forcibly displaced from their homes worldwide. The magnitude is staggering, accounting for nearly 1 in 100 alive today.1 Twenty-six of these crossed a national border and undergone formal registration processes become refugees, defined as “someone who owing well-founded fear being persecuted reasons race, religion, nationality, membership particular social group, or political opinion, outside the country his unable or, such fear, unwilling...
Background: The majority of the estimated 50 to 100 million children living with disability worldwide reside in low- or middle-income countries (LMIC). As families migrate avoid humanitarian crises, developmental and delay warrant particular attention refugee international health settings. During transitions, medical documentation may be lost diagnoses not fully understood, contributing challenges determining etiologies motor impairment. Methods: Of first who were referred International...