Internal Reference Number: FOI_9049
Date Request Received: 19/11/2025 00:00:00
Date Request Replied To: 21/11/2025 00:00:00
This response was sent via: By Email
Request Summary: Spinal Muscular Atrophy (SMA) Treatment
Request Category: Private Individuals
| Question Number 1: I would be grateful if you could please answer the following questions with regards to treatment of spinal muscular atrophy: Within your Trust/ Health Board, where are patients (aged 2yrs +) with a diagnosis of Spinal Muscular Atrophy referred to for treatment? | |
| Answer To Question 1: Paediatric Dept: Their care is shared with a tertiary centre . This patient group do not get referred into us as SMA patients , but they may be referred from our local population due symptoms that require investigation and are then diagnosed with SMA . | |
| Question Number 2: How many patients with Spinal Muscular Atrophy have been referred in: A. The last 12 months? (or the latest 12 months of data you have available) B. The last 5 years? Could you please split this out into SMA type if possible ( Type 0, 1, 2, 3, 4) 鈥� (see attached ICD-10 codes) | |
| Answer To Question 2: Unable to answer- see response to Q1 | |
| Question Number 3: If your Trust/ Health Board receives referrals, where are these referrals made from? | |
| Answer To Question 3: Unable to answer- see response to Q1 | |
| Question Number 4: How many patients return to local care for continued treatment once referred to a specialist centre? | |
| Answer To Question 4: Unable to answer- see response to Q1 | |
| Question Number 5: If you have a treating centre for Spinal Muscular Atrophy in your trust, what is the average length of stay (or annual bed days) of patients being treated? | |
| Answer To Question 5: Unable to answer- see response to Q1 | |
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