Comorbidities of Rare Epilepsies: Results from the Rare Epilepsy Network

By |2018-10-13T12:47:18+00:00October 13th, 2018|Categories: DSF Research Review|Tags: , |

(Ho et al. 2018) The Rare Epilepsy Network (REN), a collaboration among more than 30 rare epilepsy patient groups including the Dravet Syndrome Foundation, released the first summary of data collected through their web-based, patient-reported database. 795 patients and caregivers participated, 106 of which were identified as Dravet syndrome, representing the 3rd largest group of [...]

Quality of life and comorbidities associated with Dravet syndrome severity: a multinational cohort study

By |2018-01-22T15:59:17+00:00January 1st, 2018|Categories: DSF Research Review|Tags: , , |

(Lagae et al. 2017) This survey of 584 mostly European caregivers of patients with Dravet syndrome took a different approach than the previous surveys, measuring the frequency of several different convulsive seizures and comparing seizure burden to comorbidities. Patients with the highest current seizure frequency (CSF) had more severely affected speech and motor profiles than [...]

Parental perception of co-morbidities in children with Dravet syndrome

By |2018-01-22T15:39:39+00:00November 10th, 2017|Categories: DSF Research Review|Tags: , |

(Knupp, et al. 2017) This online survey of 202 caregivers measured frequencies of reported comorbidities commonly associated with Dravet syndrome. 99% of caregivers reported an issue with appetite, 82% reported sleep concerns, 75% reported falls and balance concerns, and 69% reported significant concerns with the patient's attention. Detailed analysis showed that most concerns outpaced the [...]