We are always trying to make the Register more useful to you and your clinical team. Since the day we launched we have been hearing that some people would like to share their responses with their clinicians. We understand that not everyone wants to do this, but for those that do, we want to offer the choice!
Please be aware that not all clinicians participate in the MS Register and will not necessarily be able to (or want to) read any data that you provide. This is currently a trial for a few sites and if successful could be made more widely available.
If you WOULD like to share your data with your clinical team, then you can opt in to do so by clicking the ‘Share Data with your NHS Team’ once you are logged in to the Register.
There are no implications to NOT sharing data. The default is always to not share data; you have to explicitly choose what questionnaires you are happy to share.
To share your data securely, you need to login to the Register. Click on ‘Your details’ and confirm your postcode, by checking it’s correct and then click ‘Complete’. Next on the left hand side, click on ‘Share data with your NHS Team,’
Based on the postcode you have entered and confirmed, the first dropdown should have found hospitals near to where you live. You need to click on the drop down and choose the hospital you attend.
Next pick which questionnaires you are happy to share data from. It is entirely up to you what you decide to share from the list. Then click the ‘Complete’ button. If your hospital isn’t affiliated to the Register, you will be taken to the ‘Your details’ page and then you can either update some questionnaires! Or sign out. If you don’t have a study ID then you have finished.
Next, if you have your study ID (not everyone has) you will be taken to the ‘Study ID page.’ On your consent form there is a Unique Study ID number (which is on the bottom right of the consent form that you signed and were given a copy of by your MS nurse or Doctor, if you cannot find it, please let us know). You can type your 6 digit number into the boxes and then click ‘Submit Code’ button. Now you’ve finished, and you can either complete a questionnaire if convenient or log out.
Also, we have recently created a YouTube video to show you how to add your study ID. Watch it here: https://www.youtube.com/watch?v=iKksmOfE_Lk
If you need any further information please email firstname.lastname@example.org
The UK MS Register Team