Background Caregivers of a child with a Developmental and Epileptic Encephalopathy
(DEE) often report challenges accessing relevant and understandable information regarding …

Introduction Developmental and epileptic encephalopathies (DEEs) are rare epilepsy
conditions that collectively impact 1 in 2000 children. They are highly genetically …

Objective To understand parents' of children with developmental and epileptic
encephalopathies needs and preferences for psychological resources. Methods Using a …

Developmental and epileptic encephalopathies (DEEs) are chronic and life-threatening
conditions, frequently with a genetic basis and infantile-onset. Caregivers often experience …

Aim To investigate the psychosocial impact of genetic testing for childhood‐onset
developmental and epileptic encephalopathies (DEEs) in order to identify parents' …

Objectives Identifying genetic pathogenic variants improves clinical outcomes for children
with developmental and epileptic encephalopathy (DEE) by directing therapy and enabling …

Aim To describe the experiences and unmet medical care needs of a group of parents of
children with developmental and epileptic encephalopathies (DEEs) caused by the SCN1A …

As whole exome sequencing (WES) is just starting to be used as a diagnostic tool in
paediatric neurology for children with a neurological disorder, and patient experiences and …

Parents of infants at risk of neurodevelopmental impairment require clear and individualized
information about what to expect for their child, yet data suggest they have difficulty knowing …

Background Young people with neurological impairments such as epilepsy are known to
receive less adequate services compared to young people with other long-term conditions …