Friday 20 March 2026
Internal Reference Number: FOI_9196
Date Request Received: 29/01/2026 00:00:00
Date Request Replied To: 10/02/2026 00:00:00
This response was sent via: By Email
Request Summary: Dravet syndrome and Lennox–Gastaut syndrome
Request Category: Companies
| Question Number 1: For all questions, patient numbers should represent unique patients within the specified reporting period. Where a monthly breakdown is not available, please provide unique patient numbers aggregated by quarter instead. The number of patients under the trust’s care with a recorded diagnosis of Dravet syndrome in each month of 2025 (January–December). Patients may be counted in more than one month. Likely coded as ICD-10 code G40.3 or SNOMED code 230437002. a. Patient numbers segmented by age: i. <2 years old ii. 2-8 years old iii. 9-17 years old iv. 18 years+ | |
| Answer To Question 1: Please see our response to all questions in the spreadsheet attached. Please note, for questions 3-11 we are unable to answer parts c or d as we were unable to search for "other anti-seizure medications" as this was too broad. To accompany this answer to question 1 please also see the documents listed below:  13495 - FOI_9196 - Dravet syndrome and Lennox–Gastaut syndrome FOR ISSUE.xlsx | |
| Question Number 2: 2. The number of patients under the trust’s care with a recorded diagnosis of Lennox-Gastaut syndrome in each month of 2025 (January-December). Patients may be counted in more than one month. Likely coded as ICD-10 code G40.4 or SNOMED code of 230418006. a. Patient numbers segmented by age: i. <2 years old ii. 2-8 years old iii. 9-17 years old iv. 18 years+ | |
| Answer To Question 2: Please see our response to all questions in the spreadsheet attached. | |
| Question Number 3: 3. The number of patients under the trust’s care who have been treated with fenfluramine in 2025 (January-December), separated by month a. Patient numbers segmented by age: i. <2 years old ii. 2-8 years old iii. 9-17 years old iv. 18 years+ b. For these patients, how many of them had a diagnosis of: i. Dravet Syndrome (ICD10 Code: G40.3) SCTID: 230437002 ii. Lennox-Gastaut syndrome (ICD10 Code: G40.4) SCTID: 230418006 c. For patients with a recorded diagnosis of Dravet syndrome treated with fenfluramine during 2025, please indicate which other anti-seizure medications were recorded for these patients during the year, and the number of patients associated with each medication d. For patients with a recorded diagnosis of Lennox–Gastaut syndrome treated with fenfluramine during 2025, please indicate which other anti-seizure medications were recorded for these patients during the year, and the number of patients associated with each medication | |
| Answer To Question 3: Please see our response to all questions in the spreadsheet attached. Please note, for questions 3-11 we are unable to answer parts c or d as we were unable to search for "other anti-seizure medications" as this was too broad. | |
| Question Number 4: 4. The number of patients under the trust’s care who have been treated with cannabidiol in 2025 (January-December), separated by month a. Patient numbers segmented by age: i. <2 years old ii. 2-8 years old iii. 9-17 years old iv. 18 years+ b. For these patients, how many of them had a diagnosis of: i. Dravet Syndrome (ICD10 Code: G40.3) SCTID: 230437002 ii. Lennox-Gastaut syndrome (ICD10 Code: G40.4) SCTID: 230418006 c. For patients with a recorded diagnosis of Dravet syndrome treated with fenfluramine during 2025, please indicate which other anti-seizure medications were recorded for these patients during the year, and the number of patients associated with each medication d. For patients with a recorded diagnosis of Lennox–Gastaut syndrome treated with fenfluramine during 2025, please indicate which other anti-seizure medications were recorded for these patients during the year, and the number of patients associated with each medication. | |
| Answer To Question 4: Please see our response to all questions in the spreadsheet attached. Please note, for questions 3-11 we are unable to answer parts c or d as we were unable to search for "other anti-seizure medications" as this was too broad. | |
| Question Number 5: 5. The number of patients under the trust’s care who have been treated with cenobamate in in 2025 (January-December), separated by month a. Patient numbers segmented by age: i. <2 years old ii. 2-8 years old iii. 9-17 years old iv. 18 years+ b. For these patients, how many of them had a diagnosis of: i. Dravet Syndrome (ICD10 Code: G40.3) SCTID: 230437002 ii. Lennox-Gastaut syndrome (ICD10 Code: G40.4) SCTID: 230418006 c. For patients with a recorded diagnosis of Dravet syndrome treated with fenfluramine during 2025, please indicate which other anti-seizure medications were recorded for these patients during the year, and the number of patients associated with each medication d. For patients with a recorded diagnosis of Lennox–Gastaut syndrome treated with fenfluramine during 2025, please indicate which other anti-seizure medications were recorded for these patients during the year, and the number of patients associated with each medication. | |
| Answer To Question 5: Please see our response to all questions in the spreadsheet attached. Please note, for questions 3-11 we are unable to answer parts c or d as we were unable to search for "other anti-seizure medications" as this was too broad. | |
| Question Number 6: 6. The number of patients under the trust’s care who have been treated with rufinamide in 2025 (January-December), separated by month a. Patient numbers segmented by age: i. <2 years old ii. 2-8 years old iii. 9-17 years old iv. 18 years+ b. For these patients, how many of them had a diagnosis of: i. Lennox-Gastaut syndrome (ICD10 Code: G40.4) SCTID: 230418006 c. For patients with a recorded diagnosis of Lennox–Gastaut syndrome treated with fenfluramine during 2025, please indicate which other anti-seizure medications were recorded for these patients during the year, and the number of patients associated with each medication. | |
| Answer To Question 6: Please see our response to all questions in the spreadsheet attached. Please note, for questions 3-11 we are unable to answer parts c or d as we were unable to search for "other anti-seizure medications" as this was too broad. | |
| Question Number 7: 7. The number of patients under the trust’s care who have been treated with stiripentol in 2025 (January-December), separated by month a. Patient numbers segmented by age: i. <2 years old ii. 2-8 years old iii. 9-17 years old iv. 18 years+ b. For these patients, how many of them had a diagnosis of: i. Dravet Syndrome (ICD10 Code: G40.3) SCTID: 230437002 ii. Lennox-Gastaut syndrome (ICD10 Code: G40.4) SCTID: 230418006 c. For patients with a recorded diagnosis of Dravet syndrome treated with fenfluramine during 2025, please indicate which other anti-seizure medications were recorded for these patients during the year, and the number of patients associated with each medication d. For patients with a recorded diagnosis of Lennox–Gastaut syndrome treated with fenfluramine during 2025, please indicate which other anti-seizure medications were recorded for these patients during the year, and the number of patients associated with each medication. | |
| Answer To Question 7: Please see our response to all questions in the spreadsheet attached. Please note, for questions 3-11 we are unable to answer parts c or d as we were unable to search for "other anti-seizure medications" as this was too broad. | |
| Question Number 8: 8. The number of patients under the trust’s care who have been treated with clobazam in 2025 (January-December), separated by month a. Patient numbers segmented by age: i. <2 years old ii. 2-8 years old iii. 9-17 years old iv. 18 years+ b. For these patients, how many of them had a diagnosis of: i. Dravet Syndrome (ICD10 Code: G40.3) SCTID: 230437002 ii. Lennox-Gastaut syndrome (ICD10 Code: G40.4) SCTID: 230418006 c. For patients with a recorded diagnosis of Dravet syndrome treated with fenfluramine during 2025, please indicate which other anti-seizure medications were recorded for these patients during the year, and the number of patients associated with each medication d. For patients with a recorded diagnosis of Lennox–Gastaut syndrome treated with fenfluramine during 2025, please indicate which other anti-seizure medications were recorded for these patients during the year, and the number of patients associated with each medication. | |
| Answer To Question 8: Please see our response to all questions in the spreadsheet attached. Please note, for questions 3-11 we are unable to answer parts c or d as we were unable to search for "other anti-seizure medications" as this was too broad. | |
| Question Number 9: 9. The number of patients under the trust’s care who have been treated with sodium valproate in 2025 (January-December), separated by month a. Patient numbers segmented by age: i. <2 years old ii. 2-8 years old iii. 9-17 years old iv. 18 years+ b. For these patients, how many of them had a diagnosis of: i. Dravet Syndrome (ICD10 Code: G40.3) SCTID: 230437002 ii. Lennox-Gastaut syndrome (ICD10 Code: G40.4) SCTID: 230418006 c. For patients with a recorded diagnosis of Dravet syndrome treated with fenfluramine during 2025, please indicate which other anti-seizure medications were recorded for these patients during the year, and the number of patients associated with each medication d. For patients with a recorded diagnosis of Lennox–Gastaut syndrome treated with fenfluramine during 2025, please indicate which other anti-seizure medications were recorded for these patients during the year, and the number of patients associated with each medication. | |
| Answer To Question 9: Please see our response to all questions in the spreadsheet attached. Please note, for questions 3-11 we are unable to answer parts c or d as we were unable to search for "other anti-seizure medications" as this was too broad. | |
| Question Number 10: The number of patients under the trust’s care who have been treated with topiramate in 2025 (January-December), separated by month a. Patient numbers segmented by age: i. <2 years old ii. 2-8 years old iii. 9-17 years old iv. 18 years+ b. For these patients, how many of them had a diagnosis of: i. Dravet Syndrome (ICD10 Code: G40.3) SCTID: 230437002 ii. Lennox-Gastaut syndrome (ICD10 Code: G40.4) SCTID: 230418006 c. For patients with a recorded diagnosis of Dravet syndrome treated with fenfluramine during 2025, please indicate which other anti-seizure medications were recorded for these patients during the year, and the number of patients associated with each medication d. For patients with a recorded diagnosis of Lennox–Gastaut syndrome treated with fenfluramine during 2025, please indicate which other anti-seizure medications were recorded for these patients during the year, and the number of patients associated with each medication. | |
| Answer To Question 10: Please see our response to all questions in the spreadsheet attached. Please note, for questions 3-11 we are unable to answer parts c or d as we were unable to search for "other anti-seizure medications" as this was too broad. | |
| Question Number 11: . The number of patients under the trust’s care who have been treated with lamotrigine in 2025 (January-December), separated by month a. Patient numbers segmented by age: i. <2 years old ii. 2-8 years old iii. 9-17 years old iv. 18 years+ b. For these patients, how many of them had a diagnosis of: i. Lennox-Gastaut syndrome (ICD10 Code: G40.4) SCTID: 230418006 c. For patients with a recorded diagnosis of Lennox–Gastaut syndrome treated with fenfluramine during 2025, please indicate which other anti-seizure medications were recorded for these patients during the year, and the number of patients associated with each medication. | |
| Answer To Question 11: Please see our response to all questions in the spreadsheet attached. Please note, for questions 3-11 we are unable to answer parts c or d as we were unable to search for "other anti-seizure medications" as this was too broad. | |
| Please see Attachments: | |
| To return to the list of all the FOI requests please click here | |
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