Creating a user account
In the first step of the registration process, you create your user account. This means that you enter your name, date of birth and gender and choose a user name and password. You only need to create your user account once; using the user name and password you create now, you can log in again later at any time in order to continue an incomplete registration, update your clinical details and/or contact information or simply view your data at any time, whether your registration is complete or not.
When creating a user account, the following situations are possible:
- If you are a patient aged 16 or over, then please create a user account in your own name.
- If you are a patient aged under 16, please ask your parent or guardian to create a user account under their name and add you as a patient to their account.
- If you are a parent or guardian of a patient aged 16 or over, then please ask the patient to create a user account under their own name.
- If you are a parent or guardian of a patient aged under 16, please create a user account under your own name and add the patient to your account.
Note that a parent/guardian can have one or more patients added to his/her account (e.g., siblings with SMA can be added to the same parent’s account).
Whenever we have any new information for a patient, we will get in touch with the owner of the respective user account. In a later registration step we will ask not only the patient (if old enough), but also the account owner (if different from the patient) to sign the informed consent form, which is a form that asks you to confirm that you are happy to have your data stored in the registry and whether or not you want to be contacted if we have information e.g. about a clinical trial that might be relevant to you.
Entering contact details
In the next step, you as the user account owner will enter your contact details. We need your postal address, a telephone number and an e-mail address. You are encouraged to enter more than one postal/e-mail address and/or phone number; this makes it easier for us to contact you if you move house but forget to update your data.
When you have entered your postal address, you will receive a letter from us with information on what to do if you forget your password.
Now you can add patients with Spinal Muscular Atrophy (SMA) to your user account. You can only add either yourself or a child of whom you are a parent or guardian. (If you know someone else in your family who might benefit from being added to the registry, you might want to suggest that they register themselves, as you cannot register on their behalf.) If you are entering a patient who is not yourself, you will need to provide some further personal and contact details.
Next, an informed consent form is automatically created for each patient. The consent forms are personalised, containing the name of the respective patient as well as of the user account owner (if different from the patient). You will be able to agree online. The informed consent is a PDF document, which you can download and print for your own documentation.
Sending / making available the genetic report
In this step we ask you to send us a copy of each patient’s genetic report and/or to give us the name of the hospital or clinic where the test was done, so that we can retrieve this ourselves or complete your genetic information, if necessary. If the report is already available to you - or will be in the near future - then please send us a copy either together with the informed consent (see below) or as soon as possible thereafter. Even if you are sending us a copy of your report, we still ask you to provide us with contact details of the doctor/hospital where the genetic test has been carried out. This not only allows us to request a copy of the genetic report ourselves if necessary, but it also allows us to contact your doctor (if we need to) to check that we have got everything correct. Note that we need a copy of the full genetic report before we can upload the patient’s medical data into the global TREAT-NMD database.
Filling in the questionnaire
Finally, the questionnaire appears. You can complete it directly on-screen. Where possible, automatic checks are performed to make sure your data entries make sense and do not contradict each other. For example, if you by mistake enter an impossible date of birth, you are alerted to this immediately. The questionnaire asks questions about each patient’s genetic and clinical state. You can view the questionnaire in advance.
Updating your details
You can return to each registration step at any time, for instance to complete, update or simply view your/the patient’s data. In this way you can also check whether we have received your informed consent form and/or genetic report. Once a year we send out an email asking for a clinical data update but you are encouraged to inform us about major changes whenever they occur (including any change in your contact details). We also send out a letter when a patient turns 16, asking them whether they would like to move to their own user account. It is possible to withdraw your data from the UK registry at any time - please contact us if you wish this to be done. In this case, your data will also be removed from the global database.