Internal Reference Number: FOI_9413
Date Request Received: 18/05/2026 00:00:00
Date Request Replied To: 27/07/2026 00:00:00
This response was sent via: By Email
Request Summary: Transthyretin Amyloidosis (ATTR)
Request Category: Companies
| Question Number 1: I am writing to request information under the Freedom of Information Act. I would be grateful if you could provide the following data points. FOI Request: Transthyretin Amyloidosis (ATTR) Information, May-26 How many new patients have been diagnosed with wild type Transthyretin Amyloid Cardiomyopathy (ATTR-CM) in your Trust in the last 4 months? | |
| Answer To Question 1: Please see our response to Q1-6 in the spreadsheet attached. To accompany this answer to question 1 please also see the documents listed below:  13751 - FOI_9413 - Transthyretin Amyloidosis (ATTR).xlsx | |
| Question Number 2: How many new patients have been diagnosed with hereditary Transthyretin Amyloid Polyneuropathy (ATTR-PN) in your Trust in the last 4 months? | |
| Answer To Question 2: Please see attached | |
| Question Number 3: What is the total number of patients with wild type Transthyretin Amyloid Cardiomyopathy (ATTR-CM) being treated in your Trust? | |
| Answer To Question 3: Please see attached | |
| Question Number 4: What is the total number of patients with hereditary Transthyretin Amyloid Polyneuropathy (ATTR-PN) being treated in your Trust? | |
| Answer To Question 4: Please see attached | |
| Question Number 5: Of the newly diagnosed wild type ATTR-CM patients, how many were initiated with the following treatments 1. Vutrisiran 2. Tafamidis 61mg 3. Acoramidis 4. Enrolled in a clinical study | |
| Answer To Question 5: Part 4: the Trust is not currently involved in any clinical studies to treat wild type ATTR-CM patients | |
| Question Number 6: Of the newly diagnosed ATTR-PN patients, how many were initiated with the following treatments 1. Vutrisiran 2. Eplontersen 3. Enrolled in a clinical study | |
| Answer To Question 6: Part 3: the Trust is not currently involved in any clinical studies to treat ATTR-PN patients. | |
| Question Number 7: What is your Trust鈥檚 protocol for confirming diagnosis of ATTR patients? Is diagnosis confirmed by your Trust or the National Amyloidosis Centre (NAC)? | |
| Answer To Question 7: Yes, we would generally make the diagnosis and then refer if suitable, to the National Amyloidosis Centre. | |
| Question Number 8: Of the diagnosed patients, how many had their diagnosis made/confirmed 1. In your Trust 2. By the National Amyloidosis Centre (NAC) London or Midlands | |
| Answer To Question 8: No central registry is held so this would require a manual search of patient records. This would require us to manually find the patients with that specific condition and then to manually search for and extract any relevant information. This would likely exceed the cost limit. | |
| Question Number 9: How many patients have been confirmed for treatment initiation either 1. Virtually 2. In person | |
| Answer To Question 9: No central registry is held so this would require a manual search of patient records. This would require us to manually find the patients with that specific condition and then to manually search for and extract any relevant information. This would likely exceed the cost limit. | |
| Please see Attachments: | |
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