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.
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 their personal and contact details.
Next, an Informed Consent Form is automatically created for each patient. This includes information about the UK SMA Patient Registry and Consent Statements at the bottom of the page. You will be able to agree online by placing your initials in the box beside each Consent Statement. 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). 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 to give us the name of the hospital or clinic where the test was done. If the report is available to you, please upload a copy using the patient registry's secure upload facility.
Even if you are able to provide 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. Please note that we need a copy of the full genetic report before the patient’s medical data can be used to address enquiries from researchers into the anonymised registry data.
Filling in the questionnaires
Finally, the questionnaires appears. You can complete them 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 questionnaires ask questions about each patient’s genetic and clinical state and their quality of life. You can view the questionnaires 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 data review and update but you are encouraged to inform us about major changes whenever they occur (including any change in your contact details). We also contact the parent/guardian when a patient turns 16, asking if the young patient would like to move to their own user account. It is possible to withdraw your data from the UK SMA Patient Registry at any time - please contact us if you wish this to be done at email@example.com