Time to Diagnosis in the UK: Dravet Syndrome - Version 1
Research type
Research Study
Full title
Real-World Evidence Study of Time to Diagnosis and Differential Diagnoses in Dravet Syndrome in the UK
IRAS ID
262175
Contact name
Richard Chin
Contact email
Sponsor organisation
GW Pharmaceuticals
Duration of Study in the UK
0 years, 6 months, 2 days
Research summary
Dravet syndrome is a rare, severe type of childhood epilepsy which begins during the first year of life. It has a very damaging effect on development and because of their disability, patients need lifelong care. Patients with Dravet syndrome experience frequent seizures, which continue for long periods of time and are very resistant to treatment. The purpose of treatment is to try to reduce the number and severity of seizures using a mixture of anti-epileptic drugs or anti-convulsants.\n\nDravet syndrome patients are at risk of being misdiagnosed with a range of related illnesses. There is a genetic test which could help patients with Dravet syndrome to be diagnosed, however, this test is not yet routinely performed. Earlier diagnosis leads to earlier treatment, and earlier treatment could improve patients’ awareness and seizure control compared to delayed treatment.\n\nThe purpose of this study is to better understand the average time taken for Dravet syndrome patients to be diagnosed in the UK, and the number and type of different diagnoses a patient might receive before their final diagnosis of Dravet syndrome. This will be achieved by looking at medical records of patients with Dravet syndrome at five sites across the UK. It is expected that the results of this study could be presented at a scientific conference and subsequently published as a manuscript in a scientific journal. The study could also lead to further work to advise the NHS on the time it takes for patients with Dravet syndrome to be diagnosed and suggest that changes to the way doctors diagnose Dravet syndrome could reduce the burden on the NHS.\n\nThe research proposal has been written by GW Pharmaceuticals, Costello Medical, and doctors experienced in Dravet syndrome. Five sites in England, Scotland and Wales have been chosen to ensure a range of patient experiences are included.\n
REC name
Yorkshire & The Humber - Leeds East Research Ethics Committee
REC reference
20/YH/0173
Date of REC Opinion
19 Aug 2020
REC opinion
Further Information Favourable Opinion