Update from the MS Pregnancy Register

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Navigating pregnancy with MS: The UK MS Pregnancy Register

As of December 2023, we have recruited 223 participants to the UK MS Pregnancy Register since the study began back in 2021. We wanted to update you on what we’ve learnt so far. We set up the register to help answer some questions around MS and pregnancy, as there is very little information out there. We wanted to understand more about the types of decisions women with MS make regarding pregnancy and what factors influence these decisions. Thank you to everyone who has very generously signed up, we are starting to understand more about the experiences of MS and pregnancy.

An update on what we know so far:

223 of you have signed up so far, which is incredible! The majority, 96%, of you have relapsing remitting MS. Just under half of you have reported being previously pregnant, and nearly 1 in 3 people reported at least 2 prior pregnancies. While most of you have signed up in your first trimester, we’ve had people sign up from as early as 2 weeks all the way to 40 weeks, which is amazing.

9/10 people have taken a disease-modifying therapy (DMT) for their MS at some point, and just under half of you continued with this into pregnancy. For those who were still taking a DMT, we also asked you if you planned to continue this throughout your pregnancy: 56% of you planned to continue with your DMT when asked at 15-weeks and 78% of you planned to continue when asked at 24-weeks. When making this decision, most of you discussed this with your MS team or GP. Over 90% of you reported taking supplements, most commonly vitamin D and folic acid.

6% of women reported experiencing a relapse either during pregnancy or postpartum, with most women experiencing a single relapse. Just over half of women reported their relapse to be mild and just under half reported their relapse to be moderate, with no hospitalisations reported. As the study continues, we hope to learn more about relapses during and after pregnancy.

We also have some postpartum data we can share with you. There were no preterm births, and no major congenital malformations were reported. Around 2 in 5 women reported to be exclusively breastfeeding at 3 months. Some women had reported switching from exclusively breastfeeding to formula/mixed feeding due to low milk supply. When asked whether you felt your MS influenced your breastfeeding decision, 6 of you confirmed that your MS had influenced your decision; less than half cited DMT as a reason. Of the postpartum data we have, by 12 months all babies had reached their milestones as expected which is great to hear. By answering these questions, we learn more about the decisions women with MS make and what influences these decisions.

Thank You

We appreciate it can be challenging to take the time to fill in these questionnaires, especially when managing your MS, pregnancy and being a mother. But this data is really important to helping us understand both pregnancy and postpartum experiences in women with MS. If you did have 10 minutes we would really appreciate if you could log into the register portal and complete any pregnancy questionnaires. It doesn’t matter if they are overdue, your information is extremely valuable to our study.

Thank you for taking the time to read this and thank you to everyone who has already signed up! We really appreciate your support, we couldn’t do this without you. Please do continue to support us.

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: pregnancy@ukmsregister.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.

How to find the Questionnaires

You may have a questionnaire waiting for you, you can check this now: Please go to https://ukmsregister.org/Account/Login

Enter your login details and then go to ‘Other Studies’.

Please click on ‘Pregnancy’ under ‘Eligible Studies’, you should see new surveys on the left of the page.

If you have any issues, please get in touch.