Data usage

In order to facilitate multinational co-operation and make it more likely that clinical trials can take place, medical data stored in the UK SMA registry is transferred into a central registry for SMA where patient data from various national SMA registries across Europe is collected. However, in order to increase the security of your data, your name is not transferred but instead you are given a “pseudonym”, i.e. a unique ID such as a random number. Of your other personal and contact data, only two items are transferred into the global TREAT-NMD database. One is the first part of your postcode, identifying a rather large area; this is very helpful, for example, for choosing clinical trial sites. With this information, planners of clinical trials can see how many patients are eligible for a specific trial in each region of a country. The other item is the month and year of your date of birth, so that your approximate age is apparent. This information – in combination with the clinical information you provide about your condition and symptoms – is very important for making advances in learning about the natural history of SMA.

Scientists and doctors around the world can seek permission from the TREAT-NMD Global Database Oversight Committee (TGDOC) to make use of the global patient registry. For example, if they want to search the global database for patients suitable for a particular project such as a clinical trial, they can explain to the TGDOC what their trial will involve and show that they have already been given all the appropriate ethical approvals for the trial to take place. If everything is in order, the TGDOC will approve their request and they will be entitled to query the database for the information they need – which could be something like “patients living in the UK with SMA type III who are still able to walk” or “patients living in any country in Europe with SMA type I” – or almost any other kind of question you could imagine, all depending on what their particular treatment hopes to address. Once their query has been approved and performed, qualifying patients will be traced and provided with information material by the national registry curators (i.e. us – in the UK). Then it is entirely up to you – the patient – whether you would like to get in contact with the respective scientists/doctors. On no account will we pass on your name or contact details without your consent.