It’s been 2 years since we launched the UK MS Pregnancy Register, and we wanted to let you know some of the findings that you have contributed to. When we set up this register to understand how women with MS in the UK approach and experience pregnancy, there were so many unknown unknowns. We didn’t (and still don’t) know how many women with MS in the UK get pregnant each year. However, thanks to everyone who has taken part and generously given their data, we now know more about how people with MS in the UK approach pregnancy.
What have we learnt?
So far, over 170 of you have signed up to and taken part in the UK MS Pregnancy Register, which is amazing. Most of you have relapsing remitting MS, however about 1 in 20 people taking part have progressive MS. On average, people taking part have had MS for about 5 years when they get pregnant. For about half of you, this is your first pregnancy. Lots of you signed up in the first trimester of pregnancy, but we’ve had people signing up at every stage of pregnancy – right up to 36+ weeks!
9/10 people have ever taken a disease modifying therapy, and just under half of you have continued this during pregnancy. Most people discuss their pregnancy plans with their MS team or GP. Where people continue disease modifying therapy during pregnancy, this is most usually natalizumab (Tysabri) or Glatiramer (Copaxone or Brabio). Most of you take supplements during pregnancy, either pregnancy-specific and/or vitamin D.
We have also learnt that coming back to the pregnancy register to complete your questionnaires after pregnancy is really challenging for many of you – and we can understand this – with a small child, having a shower is a challenge! But this information is really crucial to help us to understand the post partum period, and the challenges that people living with MS face. If you could make 10 minutes to sign into your register portal here and do any pregnancy questionnaires we would be hugely grateful – it doesn’t matter if they are 1,2, or 12 months overdue; your information is still really valuable for this study.
If you want to feedback to us about how we can improve how the UK MS Pregnancy Register works for you, then we would love to hear from you – drop us a line by replying to this email, or contact firstname.lastname@example.org. If you think it would be easier to run through the questionnaire over the phone or by email, let us know and we can arrange for that.
We are hugely grateful to every single person that has signed up so far – without you we would not have been able to get this far. Please do continue to support us!
How to find the Questionnaires
You may have a questionnaire waiting for you, you can check this now:
Hear more about the Pregnancy Register in this short video from Dr Ruth Dobson.