Reduction in school individualized education program (IEP) services during the COVID-19 pandemic

PurposeThe COVID-19 pandemic created novel challenges for school systems and students, particularly students with disabilities. In the shift to remote/distance learning, this report explores the degree to which children with disabilities did not receive the special education and related services defined in their individualized education program (IEP).MethodsPatients attending an outpatient tertiary care center for neurodevelopmental disabilities in Maryland were surveyed on the impact of the pandemic on educational services provision.ResultsNearly half (46%) of respondents qualified for special education and related services through an IEP before the start of the COVID-19 pandemic. Among those with IEPs, 48% attested to reduced frequency and/or duration of special education and/or related services during the pandemic. The reduction was greatest in occupational therapy services (47%), followed physical therapy services (46%), and special education services (34%).ConclusionThis survey of children with disabilities observes a substantial reduction in IEP services reported in their completed surveys. To address the observed reduction in IEP services, we sought additional education for clinicians on the rights of students with disabilities in anticipation of students’ re-entry to the classroom. A special education law attorney provided an instructional session on compensatory education and recovery services to prepare clinicians to properly inform parents about their rights and advocate for patients with unmet IEP services during the pandemic

Pandemic intake questionnaire to improve quality, effectiveness, and efficiency of outpatient neurologic and developmental care at the Kennedy Krieger institute during the COVID-19 pandemic

BackgroundThe COVID-19 pandemic uniquely affects patients with neurologic and developmental disabilities at the Kennedy Krieger Institute. These patients are at increased risk of co-morbidities, increasing their risk of contracting COVID-19. Disruptions in their home and school routines, and restrictions accessing crucial healthcare services has had a significant impact.MethodsA Pandemic Intake questionnaire regarding COVID-19 related medical concerns of guardians of patients was distributed using Qualtrics. Data from May-December 2020 were merged with demographic information of patients from 10 clinics (Center for Autism and Related Disorders (CARD), Neurology, Epigenetics, Neurogenetics, Center for Development and Learning (CDL) Sickle Cell, Spinal Cord, Sturge-Weber syndrome (SWS), Tourette's, and Metabolism). A provider feedback survey was distributed to program directors to assess the effectiveness of this intervention.ResultsAnalysis included responses from 1643 guardians of pediatric patients (mean age 9.5 years, range 0–21.6 years). Guardians of patients in more medically complicated clinics reported perceived increased risk of COVID-19 (p < 0.001) and inability to obtain therapies (p < 0.001) and surgeries (p < 0.001). Guardian responses from CARD had increased reports of worsening behavior (p = 0.01). Providers increased availability of in-person and virtual therapies and visits and made referrals for additional care to address this. In a survey of medical providers, five out of six program directors who received the responses to this survey found this questionnaire helpful in caring for their patients.ConclusionThis quality improvement project successfully implemented a pre-visit questionnaire to quickly assess areas of impact of COVID-19 on patients with neurodevelopmental disorders. During the pandemic, results identified several major areas of impact, including patient populations at increased risk for behavioral changes, sleep and/or disruptions of medical care. Most program directors reported improved patient care as a result

PLASMA PROTEINS ASSOCIATED WITH NEUROLOGICAL COMPLICATIONS AND DEVELOPMENTAL DISORDERS IN PEDIATRIC SICKLE CELL DISEASE

Limited proteomic discovery and protein biomarker research exists with regards to neurological complications in pediatric sickle cell disease. Existing case reports and preliminary research have shown promising results for specific proteins with regards to certain outcomes in this population, including stroke, elevated transcranial dopper velocities, and intellectual disability. The Silent Cerebral Infarct Multi-Center Clinical Trial (SIT Trial) Biologic Repository contains longitudinal samples from 200 children ages 5 to 14 years with sickle cell disease collected over a three year period. Using an electro-chemiluminescent immunoassay, we measured the levels of two proteins: Brain Derived Neurotrophic Factor (BDNF) and Neurogranin (NRGN). We found elevated levels of BDNF and NRGN in children with sickle cell disease, in comparison to healthy pediatric control subjects. We also found that NRGN levels negatively correlated with IQ in children with sickle cell disease. These findings warrant future studies coupling protein biomarkers with advanced neuroimaging techniques in order to selectively identify brain injury in children with sickle cell disease and neurodevelopmental disorders, allowing earlier diagnosis and treatment of neurodevelopmental complications in this population

PLASMA PROTEINS ASSOCIATED WITH NEUROLOGICAL COMPLICATIONS AND DEVELOPMENTAL DISORDERS IN PEDIATRIC SICKLE CELL DISEASE

Limited proteomic discovery and protein biomarker research exists with regards to neurological complications in pediatric sickle cell disease. Existing case reports and preliminary research have shown promising results for specific proteins with regards to certain outcomes in this population, including stroke, elevated transcranial dopper velocities, and intellectual disability. The Silent Cerebral Infarct Multi-Center Clinical Trial (SIT Trial) Biologic Repository contains longitudinal samples from 200 children ages 5 to 14 years with sickle cell disease collected over a three year period. Using an electro-chemiluminescent immunoassay, we measured the levels of two proteins: Brain Derived Neurotrophic Factor (BDNF) and Neurogranin (NRGN). We found elevated levels of BDNF and NRGN in children with sickle cell disease, in comparison to healthy pediatric control subjects. We also found that NRGN levels negatively correlated with IQ in children with sickle cell disease. These findings warrant future studies coupling protein biomarkers with advanced neuroimaging techniques in order to selectively identify brain injury in children with sickle cell disease and neurodevelopmental disorders, allowing earlier diagnosis and treatment of neurodevelopmental complications in this population

Developmental disorders in children born to women with sickle cell disease: A report from the Boston Birth Cohort

Abstract Children exposed to maternal sickle cell disease (SCD) have many theoretical risks for developmental disorders, but little is known about long‐term outcomes for these children. We used the Boston Birth Cohort to compare developmental outcomes between children exposed to maternal SCD and matched, unexposed controls. Children with exposure to maternal SCD had increased risk of attention deficit hyperactivity disorder (OR 5.12, 95% CI 1.36–19.19, p = 0.02) and obesity (OR 2.74, 95% CI 1.10–6.87, p = 0.03). In utero and/or environmental exposures may help explain these findings. Further studies of outcomes of children born to women with SCD are needed

Successful treatment of choreo-athetotic movements in a patient with an EEF1A2 gene variant

Pathogenic variants in EEF1A2 , a gene encoding a eukaryotic translation elongation factor, have been previously reported in pediatric cases of epileptic encephalopathy and intellectual disability. We report a case of a 17-year-old male with a prior history of epilepsy, autism, intellectual disability, and the abrupt onset of choreo-athetotic movements. The patient was diagnosed with an EEF1A2 variant by whole exome sequencing. His movement disorder responded dramatically to treatment with tetrabenazine. To the best of our knowledge, this is the first report of successful treatment of a hyperkinetic movement disorder in the setting of EEF1A2 mutation. A trial with tetrabenazine should be considered in cases with significant choreoathetosis

Perspective: Sistas In Science - Cracking the Glass Ceiling

In this perspective, we describe our experience as women of color scientists from diverse backgrounds and similar struggles embarking upon the National Heart, Lung and Blood Institute-funded program called PRIDE (Programs to Increase Diversity among Underrepresented Minorities Engaged in Health-Related Research). Under the leadership of our mentor and friend, Betty Pace, MD, a renowned and successful African American physician-scientist, the PRIDE Program was designed to address the difficulties experienced by junior-level minority investigators in establishing independent research programs and negotiating tenure and full professor status at academic institutions. The strength of PRIDE\u27s innovative formula was pairing us with external senior mentors and, importantly, allowing us to serve as peer mentors to each other. We believe this Sister\u27s Keeper paradigm is one solution for women to overcome their limitations and extend understandings and best practices worldwide for science, medicine, and global health