UK’s MS Pregnancy Register Seeks Improved Care for Women With MS
It’s been a decade since the opening of the UK MS Register, which sought to gain a better understanding of how multiple sclerosis (MS) affects patients’ everyday lives, with a goal, according to its website, toward fueling campaigns for “fair, relevant policy and improved health care.”
Now, the newly launched UK MS Pregnancy Register will work toward educating scientists and other stakeholders about what it’s like to be pregnant while dealing with MS — and how expectant mothers and women seeking to become pregnant should best be treated.
The “vision is for improved care and advice for women with MS” that provides “reliable and digestible information” for before, during, and after pregnancy, the U.K.’s MS Society said in a press release.
“Advice around DMTs [disease-modifying therapies] and their safety during a pregnancy journey is the register’s top priority, as it’s one of the most common questions asked by women with MS,” the organizers say.
The Pregnancy Register is the brainchild of Ruth Dobson, MD, a neurologist and senior lecturer at Queen Mary University of London, who became interested in the pregnancy journeys of patients with MS following her return to work after her second maternity leave.
Launched earlier this year, the register consists of a series of surveys that are to be completed throughout each participant’s pregnancy and for the first year following birth.
Questions focus on expectant mothers and their decisions regarding disease-modifying treatments, as well as other therapies and supplements. Other queries pertain to breastfeeding choices and the overall impact of all these elements on participants, their pregnancy, and their babies.
The project also seeks to learn more about, and address, issues relating to infertility, pregnancy loss, and postpartum depression.
To participate, patients need not be on a treatment or have a specialist — and it doesn’t matter which type of MS they have. If they haven’t already, participants should first join the UK MS Register, which asks questions about them and their MS. The pregnancy study will show up on the My MS page.
“We are conducting a study to look at MS and pregnancy,” a register information sheet states.
“We don’t yet have enough information about the use of newer treatments in pregnancy,” it states. “This means that when MS teams talk to women with MS about pregnancy, there are a lot of questions that currently can’t be answered properly. It also means that women are getting different advice from different people, which can be very confusing.”
One key issue the study hopes to explore is the effects of pregnancy, and disease treatments, on the mood of new parents.
“It seems that women with MS have an increased risk of experiencing changes in their mood after having a baby, but there is very little information about this for either women with MS or their healthcare teams,” the information sheet states.
According to a longer informational sheet, what is known overall thus far is that MS seems to be less active during pregnancy, “but then may flare up (rebound) within three months after a childbirth.” However, most of that information has come from women who are not using a disease-modifying treatment, the patient sheet states.
“We don’t know what decisions are women with MS are making about breastfeeding, and also what is influencing these decisions,” the sheet also states. “Added to this, we have very little information about the supplements that women with MS take during pregnancy and after having a baby.”
It was questions such as these, and the general dearth of reported information on this topic, that led Dobson to begin developing the pregnancy registry. Working with the MS Society — which is funding the UK MS Registry — Dobson brought together neurologists from across the U.K., Scotland, and Northern Ireland, who raised funds to begin the study.
Women with MS on their pregnancy journey also collaborated with researchers to create the questions for the register, ensuring they would capture relevant information for both patients and physicians.
A questionnaire is to be completed at around the 15th week of pregnancy, then at the 24th week. After delivery, patients will be surveyed at the three-month and 12-month marks. Parents also will be contacted when their child is about 4 or 5 years old. Dobson is hoping to eventually extend this timeframe, “as the impact of pregnancy is long term.”
Participants’ physicians may be contacted for additional information about them, their pregnancy, and their babies. All information, including medical records and input from participants’ medical teams, will be kept confidential. Data will be safely stored as part of the UK MS Register and will only be viewed by study researchers. Additionally, participants may be asked to contribute to future research about MS and pregnancy.
The register is currently only open to MS patients who live in the U.K. and are pregnant. Participants will need online access to complete the surveys.
For more information on either register, send an email to [email protected]
According to the organizers, participants also must realize that “getting involved [in] the MS Pregnancy Register may not necessarily help them. But will help people with MS in the future.”