Internal Reference Number: FOI_8689
Date Request Received: 04/06/2025 00:00:00
Date Request Replied To: 21/07/2025 00:00:00
This response was sent via: By Email
Request Summary: Dravet syndrome and Lennox-Gastaut syndrome
Request Category: Companies
| Question Number 1: 1. The number of unique patients with a recorded diagnosis of Dravet syndrome in 2024-2025. Likely coded as ICD-10 code G40.3 or SNOMED code of 230437002, ideally separated by month. a. Patient numbers segmented by age: i. 0-3 years old ii. 4-8 years old iii. 9-18 years old iv. 18 years+ | |
| Answer To Question 1: Please see our response to this FOI attached. To accompany this answer to question 1 please also see the documents listed below:  FOI_8689 - Dravet syndrome and Lennox-Gastaut syndrome - FOR ISSUE v1.xlsx | |
| Question Number 2: The number of unique patients with a recorded diagnosis of Lennox-Gastaut syndrome in 2024-2025. Likely coded as ICD-10 code G40.4 or SNOMED code of 230418006, ideally separated by month. a. Patient numbers segmented by age: i. 0-3 years old ii. 4-8 years old iii. 9-18 years old iv. 18 years+ | |
| Answer To Question 2: Please see our response to this FOI attached. | |
| Question Number 3: The number of unique patients who have been treated with fenfluramine in 2024-2025, separated by month a. Patient numbers segmented by age: i. 0-3 years old ii. 4-8 years old iii. 9-18 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 these patients, please provide a detailed breakdown of concurrent treatments. Specifically, list each additional treatment received alongside fenfluramine, and indicate the number of patients receiving each | |
| Answer To Question 3: Please see our response to this FOI attached. | |
| Question Number 4: The number of unique patients who have been treated with cannabidiol in 2024-2025, separated by month a. Patient numbers segmented by age: i. 0-3 years old ii. 4-8 years old iii. 9-18 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 these patients, please provide a detailed breakdown of concurrent treatments. Specifically, list each additional treatment received alongside cannabidiol, and indicate the number of patients receiving each | |
| Answer To Question 4: Please see our response to this FOI attached. | |
| Question Number 5: The number of unique patients who have been treated with cenobamate in 2024-2025, separated by month a. Patient numbers segmented by age: i. 0-3 years old ii. 4-8 years old iii. 9-18 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 these patients, please provide a detailed breakdown of concurrent treatments. Specifically, list each additional treatment received alongside cenobamate, and indicate the number of patients receiving each | |
| Answer To Question 5: Please see our response to this FOI attached. | |
| Question Number 6: The number of unique patients who have been treated with rufinamide in 2024-2025, separated by month a. Patient numbers segmented by age: i. 0-3 years old ii. 4-8 years old iii. 9-18 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 these patients, please provide a detailed breakdown of concurrent treatments. Specifically, list each additional treatment received alongside rufinamide, and indicate the number of patients receiving each | |
| Answer To Question 6: Please see our response to this FOI attached. | |
| Question Number 7: The number of unique patients who have been treated with stiripentol in 2024-2025, separated by month a. Patient numbers segmented by age: i. 0-3 years old ii. 4-8 years old iii. 9-18 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 these patients, please provide a detailed breakdown of concurrent treatments. Specifically, list each additional treatment received alongside stiripentol, and indicate the number of patients receiving each | |
| Answer To Question 7: Please see our response to this FOI attached. | |
| Question Number 8: The number of unique patients who have been treated with clobazam in 2024-2025, separated by month a. Patient numbers segmented by age: i. 0-3 years old ii. 4-8 years old iii. 9-18 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 these patients, please provide a detailed breakdown of concurrent treatments. Specifically, list each additional treatment received alongside clobazam, and indicate the number of patients receiving each | |
| Answer To Question 8: Please see our response to this FOI attached. | |
| Question Number 9: The number of unique patients who have been treated with sodium valproate in 2024-2025, separated by month a. Patient numbers segmented by age: i. 0-3 years old ii. 4-8 years old iii. 9-18 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 these patients, please provide a detailed breakdown of concurrent treatments. Specifically, list each additional treatment received alongside sodium valproate, and indicate the number of patients receiving each | |
| Answer To Question 9: Please see our response to this FOI attached. | |
| Question Number 10: The number of unique patients who have been treated with levetiracetam in 2024-2025, separated by month a. Patient numbers segmented by age: i. 0-3 years old ii. 4-8 years old iii. 9-18 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 these patients, please provide a detailed breakdown of concurrent treatments. Specifically, list each additional treatment received alongside levetiracetam, and indicate the number of patients receiving each | |
| Answer To Question 10: Please see our response to this FOI attached. | |
| Question Number 11: The number of unique patients who have been treated with topiramate in 2024-2025, separated by month a. Patient numbers segmented by age: i. 0-3 years old ii. 4-8 years old iii. 9-18 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 these patients, please provide a detailed breakdown of concurrent treatments. Specifically, list each additional treatment received alongside topiramate, and indicate the number of patients receiving each | |
| Answer To Question 11: Please see our response to this FOI attached. | |
| Question Number 12: The number of unique patients who have been treated with lamotrigine in 2024-2025, separated by month a. Patient numbers segmented by age: i. 0-3 years old ii. 4-8 years old iii. 9-18 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 these patients, please provide a detailed breakdown of concurrent treatments. Specifically, list each additional treatment received alongside lamotrigine, and indicate the number of patients receiving each | |
| Answer To Question 12: Please see our response to this FOI attached. | |
| Please see Attachments: | |
| To return to the list of all the FOI requests please click here | |
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