Freedom of Information Request: 0474 2019/20

I am writing to request information under the Freedom of Information Act 2000 on the pharmacological treatment of symptoms of myotonia in adult patients (≥ 18 years) with Non-Dystrophic Myotonia (NDM).

I would be most grateful if you could help me in this matter by answering the following questions:

How many patients with NDM are currently treated in your organisation?  

Due to the limitations of clinical coding this information is not stored in a retrievable format. Please see the note below for further information.

How many of your organisation’s NDM patients receive pharmacological treatment for symptoms of myotonia?  

Due to the limitations of clinical coding this information is not stored in a retrievable format. Please see the note below for further information.

Which pharmacological product(s) are currently used for the treatment of symptoms of myotonia in NDM patients within your organisation? 

We can confirm that the Trust uses Mexiletine, Flecainide, and Ranolazine to treat Myotonia (we can’t identify NDM patients specifically)

What proportion of your NDM patient population receive each of the pharmacological product(s) mentioned in your response to the above question? 

Of all the patients we are treating for Myotonia, approximately 90% are on Mexiletine, 2.5% on Flecainide, and 2.5% on Ranolazine (we can’t identify NDM patients specifically)

Note

The Trust does hold the information you have requested, however we are withholding it under Section 40 (2) (Personal Information) of the Freedom of information Act (2000). In order to gather this information we would need to review individual patient files, and this would be in breach of the second data protection principle “Personal information must be processed for limited purpose”.