FOI/2025/26/083

Request

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.
   1. Patient numbers segmented by age:

                                               i.     0-3 years old

                                              ii.     4-8 years old

                                             iii.     9-18 years old

                                             iv.     18 years+

1. 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.
   1. Patient numbers segmented by age:

                                               i.     0-3 years old

                                              ii.     4-8 years old

                                             iii.     9-18 years old

                                             iv.     18 years+

1. The number of unique patients who have been treated with fenfluramine in 2024-2025, separated by month
   1. Patient numbers segmented by age:

                                               i.     0-3 years old

                                              ii.     4-8 years old

                                             iii.     9-18 years old

                                             iv.     18 years+

1. 1. 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

1. 1. 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
2. The number of unique patients who have been treated with cannabidiol in 2024-2025, separated by month
   1. Patient numbers segmented by age:

                                               i.     0-3 years old

                                              ii.     4-8 years old

                                             iii.     9-18 years old

                                             iv.     18 years+

1. 1. 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

1. 1. 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
2. The number of unique patients who have been treated with cenobamate in 2024-2025, separated by month
   1. Patient numbers segmented by age:

                                               i.     0-3 years old

                                              ii.     4-8 years old

                                             iii.     9-18 years old

                                             iv.     18 years+

1. 1. 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

1. 1. 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
2. The number of unique patients who have been treated with rufinamide in 2024-2025, separated by month
   1. Patient numbers segmented by age:

                                               i.     0-3 years old

                                              ii.     4-8 years old

                                             iii.     9-18 years old

                                             iv.     18 years+

1. 1. 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

1. 1. 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
2. The number of unique patients who have been treated with stiripentol in 2024-2025, separated by month
   1. Patient numbers segmented by age:

                                               i.     0-3 years old

                                              ii.     4-8 years old

                                             iii.     9-18 years old

                                             iv.     18 years+

1. 1. 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

1. 1. 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
2. The number of unique patients who have been treated with clobazam in 2024-2025, separated by month
   1. Patient numbers segmented by age:

                                               i.     0-3 years old

                                              ii.     4-8 years old

                                             iii.     9-18 years old

                                             iv.     18 years+

1. 1. 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

1. 1. 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
2. The number of unique patients who have been treated with sodium valproate in 2024-2025, separated by month
   1. Patient numbers segmented by age:

                                               i.     0-3 years old

                                              ii.     4-8 years old

                                             iii.     9-18 years old

                                             iv.     18 years+

1. 1. 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

1. 1. 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
2. The number of unique patients who have been treated with levetiracetam in 2024-2025, separated by month
   1. Patient numbers segmented by age:

                                               i.     0-3 years old

                                              ii.     4-8 years old

                                             iii.     9-18 years old

                                             iv.     18 years+

1. 1. 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

1. 1. 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
2. The number of unique patients who have been treated with topiramate in 2024-2025, separated by month
   1. Patient numbers segmented by age:

                                               i.     0-3 years old

                                              ii.     4-8 years old

                                             iii.     9-18 years old

                                             iv.     18 years+

1. 1. 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

1. 1. 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
2. The number of unique patients who have been treated with lamotrigine in 2024-2025, separated by month
   1. Patient numbers segmented by age:

                                               i.     0-3 years old

                                              ii.     4-8 years old

                                             iii.     9-18 years old

                                             iv.     18 years+

1. 1. 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

1. 1. 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

 

Preferably I would like the data in .xlsx or .csv format.

Response

Central London Community Health Care NHS trust are unable to supply the requested information as our datawarehouse does not contain diagnosis codes or treatment codes.