Tuesday, 7 March 2017

#ClinicSpeak: MS and its impact on pregnancy and having children

A new study to look at the impact of MS on pregnancy. #ClinicSpeak #MSBlog

Last year I was invited to attend a small meeting on MS and its impact on pregnancy and having children. As you are aware MS affects mainly women during their child bearing years and as a result has an impact on pregnancy, family planning and decisions about starting, or extending, your family. Most of the data we have on the impact of MS on pregnancy and having children predates the current era of active treatment and the newer generation of DMTs. We realised that we need to update ourselves about the issues in relation to MS and its impact on pregnancy and decisions about starting or extending a family. Before we start a large study we need to do some qualitative research to help scope out what the issues are. If you live in the UK you may be interested in participating in one of the initial focus groups. Please note these groups are voluntary and are not classified as medical research. 



Study: Understanding the Impact of Multiple Sclerosis on Pregnancy and Having Children 


Are you
  • Female 
  • Aged between 18 and 40
  • Diagnosed with relapsing-remitting multiple sclerosis (RRMS) in the last five years
  • Thinking about starting a family in the near future, or had a child/been pregnant, or decided against having children

If so, we are looking for people to participate in a research project aimed at understanding the impact of MS on pregnancy and having children. The results from this research would be used to help raise awareness and support for people with MS with children or who would like to start a family. 

Participants (around 6-8) would attend one of three planned meetings (provisionally London, Birmingham & Leeds) lasting around two hours to explore all the potential issues and factors related to decisions on having children and MS. No preparation is required for the meeting. The meetings would take place in March or April at readily accessible, central locations. The meetings would help inform the development of a questionnaire, which we aim to have completed by over 100 women with MS later this year. 

The research is being led by Professor Gavin Giovannoni (Professor of Neurology, Barts and The London School of Medicine and Dentistry), Dr Martin Duddy (Consultant Neurologist, Newcastle upon Tyne Hospitals NHS Foundation Trust), Dr Helen Ford (Consultant Neurologist, Leeds Teaching Hospital NHS Trust), Mr George Pepper (Co-Founder of Shift.ms), and Del Thomas (MS Clinical Nurse Specialist, Hereford County Hospital). 

A research company called Strategen, who have a propriety research methodology suited this project, will help run the research. 

If you would like to be involved in one of the meetings (either London, Birmingham or Leeds), please e-mail msinwomen@strategen.co.uk with your name and preferred location. Reasonable travel expenses will be reimbursed after the meeting along with a token of appreciation for your time.

CoI: This project is being funded by Teva UK Limited.

9 comments:

  1. Why is the age range up to 40 years and not 45? I think this might upset some people.

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  2. Why are criteria restricted to those diagnosed within the last 5 years? Do all the issues disappear at year 6?

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    Replies
    1. We want to look at what has changed in terms of the modern era of MS treatment, we have data on this topic prior to 5 years.

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    2. Thank you for replying. Thanks to tysabri I'm now stable enough to consider starting a family which wouldn't have been possible on beta interferon due to number and severity of relapses. Though 18yrs after diagnosis is well outside the criteria I think. I think this piece of research will be very useful and I look forward to hearing more about it.

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  3. What about those who are now unsure about having children due to having an MS diagnosis? I like the idea of having children but now I have an MS diagnosis I'm unsure.

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  4. Is Del Thomas male or female? The reason why I ask is if male the research team is male dominated.

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    Replies
    1. Del (Delyth, good Welsh name that) Thomas is female.

      Delete
    2. Thanks MD2.
      Has the research idea been presented to a lay research panel?

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    3. I have no idea but that's usually how it works, I'm sure Prof G
      can confirm or not.

      Delete

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