Dravet Syndrome and Lennox-Gastaut Syndrome - FOI Response Register

1. The number of patients treated for Dravet syndrome in 2024, ideally separated by month, or quarter
   • Patient numbers segmented by age:
     • 0-3 years old
     • 4-8 years old
     • 9-18 years old
     • 18 years+
2. The number of patients treated for Dravet syndrome in 2025, ideally separated by month, or quarter
   • Patient numbers segmented by age:
     • 0-3 years old
     • 4-8 years old
     • 9-18 years old
     • 18 years+
3. The number of patients treated for Lennox-Gastaut syndrome in 2024, ideally separated by month, or quarter
   • Patient numbers segmented by age:
     • 0-3 years old
     • 4-8 years old
     • 9-18 years old
     • 18 years+
4. The number of patients treated for Lennox-Gastaut syndrome in 2025, ideally separated by month, or quarter
   • Patient numbers segmented by age:
     • 0-3 years old
     • 4-8 years old
     • 9-18 years old
     • 18 years+

With regards to Q1-4, NHS Shetland uses the ICD 10 coding system in secondary care. The figures provided below are for the number of inpatients where ICD 10 code Dravet Syndrome G40.83 or Lennox-Gastaut Syndrome G40.81 was listed as Main Condition or Other Condition.

Nil

5. The above data separated by treatment, focusing on the following treatments:

• fenfluramine
• sodium valproate
• stiripentol
• clobazam
• cannabidiol
• levetiracetam
• topiramate
• potassium bromide
• Other treatments
  • carbamazepine
  • gabapentin
  • lacosamide
  • lamotrigine
  • oxcarbazepine
  • phenobarbital
  • pregabalin
  • tiagabine
  • vigabatrin
  • rufinamide

6. Numbers of patients moving from one specific treatment to another e.g. fenfluramide gains from cannabidiol, sodium valproate losses to cannabidiol
7. Alternatively, just the numbers of patients on each treatment for each month/quarter will be able to show how the numbers on each treatment are changing