The information on this page should tell you everything you need to know about the registration process. If you have any further questions then some of them may be answered in the "Questions and Answers" section or you can contact the Registry team.
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, gender, email address and choose a password. You only need to create your user account once; using the user name (email address) 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.
Note that a parent/guardian can have one or more patients added to his/her account (e.g., siblings with an FKRP-related condition can be added to the same parent’s account).
When creating a user account, the following situations are possible:
- If you are a patient aged 18 or over, then please create a user account in your own name.
- If you are a patient aged under 18, 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 18 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 18, please create a user account under your own name and add the patient to your 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.
Now you can add patients 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.
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 a letter 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) by logging into the registry and changing your data. We also send out a letter when a patient turns 18, asking them whether they would like to move to their own user account.
Withdrawing your data from the Registry
It is possible to withdraw your data from the Global FKRP Registry at any time – please contact us if you wish for this to be done.